Podcast transcript, Mosen at Large episode 216, progress on ableist language in the New Zealand media, where to go for great mastodon hosting, and President-elect of AER MarkRichert
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Jonathan: Hi, I’m Jonathan Mosen. This is Mosen At Large, the show that’s got the blind community talking. On this week’s episode, lots of gratitude all over the place, this week’s tech briefing, and an in-depth discussion on a range of blindness issues with the President-elect of AER, Mark Richert.
As always, it’s a pleasure to be back with you. Hope you had a good week, whether it was progress or peace, or prosperity you were seeking from the last week, I hope that you got what your heart desired. This is episode 216 of the podcast. 216 happens to be the area code for the Cleveland area in Ohio, a Midwestern state in the United States of America. It’s often been a bellwether state, hasn’t it in elections, whichever way Ohio has gone, a lot of the time the presidency is gone, not always, but a lot of the time.
In thinking about Cleveland, Ohio, I don’t know much about it, but I did wonder, was it named after Grover? I’m not talking about Grover from– I can’t do that too long. It’ll break my throat. I’m not talking about Grover from Sesame Street. Although I love Grover from Sesame Street. He was furry and cute. Now that I’ve got a granddaughter, I’ve got an excuse to get back in touch with Sesame Street again. Now, I’m talking about Grover Cleveland, former president of the United States.
Yes, apparently, Cleveland, Ohio was indeed named after Grover Cleveland, because apparently, he had a lot of property in the area. That, as far as Trump would say, is all I have to say about that. If you are in Cleveland, Ohio, and you would like to trumpet its many virtues, well, be my guest, be our guest. Put our podcast to the test, that’s what I say.
Making progress on the ableist language issue
Now, what I like about this community that we’ve built around the podcast is that we have a range of perspectives on issues.
Sometimes, we talk about things that are broken, accessibility problems that are impeding our lives. We also talk about things that are cool, and that people may benefit from. I want to express gratitude for a couple of things that have happened in my life this week. As I mentioned, last week, we had an horrific cyclone here in New Zealand, Cyclone Gabrielle. It has resulted in loss of life, absolute decimation of some industries in certain parts of the country. It is going to take us a long time to recover from this. We need, as a country, to think strategically about how we recover, how we rebuild in an era of climate change.
I was listening to the breakfast show that Bonnie and I have chosen to listen to, hosted by Tova O’Brien. She’s a very gifted journalist, and she was very popular with Newshub, TV3 where she used to work, and went Today FM, which was a rebrand of a failed previous news talk band started. They lured Tova O’Brien away to do what we call a New Zealand The Breakfast Show in American radio markets. They call it Morning Drive. We really enjoy her. She’s bubbly. She’s super intelligent. Her comments are always on point. She’s a very good interviewer. You just feel like it’s a positive way to start the day listening to Tova O’Brien on Today FM. If you’re in New Zealand, I highly recommend giving her a go.
One of the reasons why we were on the market for a new Breakfast Show was the rampant ableist language that is on our public broadcaster RNZ national that we used to listen to. I have talked about ableist language a bit on this show. You heard my select committee submission in which I discussed ableist language. I’m pleased to say the parliamentary select committee has been extremely sympathetic to this. We are going to see some progress on ableist language and its elimination in our public media as we should. As an old New Zealand ad on the TV used to say good things take time, and it’s going to take a while for that new charter to make it through Parliament.
There’s all sorts of upheaval in our public broadcasting in New Zealand because they were going to merge our radio and TV entities. Now, they’ve decided that’s too politically troublesome, and they’re not going to do that anymore. That should mean that the revised RNZ charter will eventually take effect. That has a much stronger commitment to disabled people in that charter and that select committee report does talk about ableist language and the harm that it does in wider society.
Meanwhile, on Today FM, I can only recall one use of ableist language from Tova O’Brien and the whole of 2022. When she came back from her break, there was a bunch of them she was talking about blind arrogance, blind rage, and blind political ambition. I shrugged my shoulders and thought, “Oh, brother, what’s happened over the summer break?” The use that really encouraged me to take some action occurred the day after the cyclone. In other words, the day that the mop-up was beginning and we were truly coming to terms with the ferocity of what had happened and the magnitude of what had happened.
Keep in mind that like many businesses, we had some staff for a while who were unaccounted for because all the power and all the telecommunications were down. The roads were difficult to pass. There were thousands of people who simply could not be reached. Obviously, that is hell, living hell for friends and family members, but it’s also hell for those of us who care about our people. When you can’t find people, you get very anxious. You just hope that when the coms come back, you will find those people okay. I’m very pleased to say that it took a few days, but ultimately, all our people were accounted for. Some have had some terrible flooding, and some pretty horrific experiences, but they’re all okay.
Now, on that morning after, Tova O’Brien was talking about the way that different people react to disasters, and she talked about the blindly blasé. Now, I have never heard that expression before. I suppose it trips off the tongue. Blindly blasé is a bit poetic, I suppose. As we were trying to track people down, it really seemed insensitive to me. Here I am, a chief executive who happens to be blind and this person is talking about the blindly blasé. After sleeping on it, actually, I got my laptop out at 5:00 AM because it’s when I get up. I wrote a very careful message and told her how much we love the show, and what a gifted broadcaster she is because I genuinely believe that.
I think she’s one of the best broadcasters New Zealand had. I explained that one of the reasons why we moved from morning report to her show was because of ableist language, and suddenly, it had really crept up on her show. I explained the consequences to wider society of ableist language, and particularly the hurt caused by talking about the blindly blasé, as we’re all trying to find people after the cyclone. I sent that very carefully worded email on the Wednesday and didn’t hear anything for a while. I thought, “Oh, well, maybe it went into the BitBucket. Maybe they don’t clear that address. Maybe she thought the email was so ridiculous and contemptuous that it didn’t warrant her reply.”
I thought, “Maybe there’s just a lot going on.” There’s certainly a lot going on for me as a result of the cyclone. When you are covering an event like this, there was a lot going on when you’re hosting a breakfast show with you and your team. I just left it for a while. Sure enough, on the Monday of this week, as I put this podcast together, I got one of the most gracious replies to an email that I’ve ever received in my life. It was so gracious, that I sat there stunned, and just sat there basking in this moment that somebody truly got it, somebody received the feedback so non-defensively and processed it, and wrote back in the way that she did.
I just didn’t really know how to reply, how to express my gratitude for her getting it. I won’t read the email, because I don’t have permission to and it’s been such a positive exchange. The general gist of it was she unreservedly apologised for the use of ableist language and she did use that term unreservedly apologise. She is aware of other communities where language can cause damage, and she said she needed obviously, to extend her antenna to other communities. She said, “Thank you for teaching me and for listening.” To feel free to contact her if I ever found that she was using that kind of language again, but she said that she hoped that I didn’t have cause to contact her again about that kind of language.
Now, she could have left it at that. I would have been satisfied. I am delighted that she took it on board so readily. She did one more thing. She went on the radio and she spoke about the lessons that she had learned. This is from Today FM. This is Tova O’Brien. Hopefully, given the cirques they are okay with me using this piece.
Tova: Instead of doing my usual editorial here, I am going to read some feedback I received recently. I’ve abridged the email because, well, it’s long. The author took such care to patiently and thoughtfully explain something about language to me, which I wish I hadn’t needed explaining that for which I’m enormously grateful they took the time. Perhaps in the context of what we were talking about yesterday, the roll-down “censorship debate” that we’ve been having this day in some context as well.
“Hi, Tova. My wife and I have been listening to you on Today FM since that first exciting and chaotic Monday last year. We love the show and you’re a gifted broadcaster. Thanks for the work that you and your team are putting into it. I want to stress from the outset that I’m not making a formal complaint. I’m just appealing to your sense of fairness and decency. My wife and I are both blind. Unfortunately, in recent times, your use of ableist language, particularly where blindness is concerned, has increased. I’m writing to you because you’re a thinker and a reasonable person, and I don’t think for a moment you’re intentionally trying to denigrate anyone, but nevertheless that’s the effect. I was enjoying your editorial piece on the way we all react to crises such as the floods. I identify with this like you, I’m a news junkie, and I find myself drawn into the coverage even when I may not be learning anything new, and feeling very deeply what is happening.
What compounds this for me is that the organisation of which I’m CEO has 22 offices around the country. I have around 120 staff to think about, a significant number of whom were in the path of Gabrielle. To hear when my guard was down your comments about the “blindly blasé” was incredibly hurtful as I tried to account for all my staff. I am blind and I’m far from blasé about the situation. It seems to me that blindly adds nothing at all to the point you were making. Blasé stands alone to make your point. I then did a quick search on the Today FM website and found that there has been a significant increase in your use of ableist language in 2023.
Blind arrogance, blind rage, blind political ambition. What all these references have in common is that you are hijacking the word blind to mean something other than absence of sight, and they are always pejorative. I want to explain why this matters. Disabled people make up roughly a quarter of the population. We are the largest minority in the country, but we are the most marginalized. We are not on people’s radios, in TVs, we’re not in the House of Representatives, there are very few disabled CEOs like me, our unemployment rate is over double that of the national average.
Many of these problems can be traced to one thing, attitudes. The biggest problems I’ve faced in life aren’t related to my blindness, they’re related to other people’s perceptions of it. That’s why when you, me, Tova, use the word blind as a synonym for ignorant, stupidity, unthinking, unaware, or angry, you are making a contribution to our continued marginalization. Thanks so much for reading.
Wow. Thank you. First of all, very much for listening, but thank you for taking the time to write and thank you for helping me be more thoughtful with language. You’re absolutely right on absolutely every count, including that I’m not intentionally trying to denigrate anyone, but I completely understand now that I am. I can’t promise that I’ll get this right all of the time, I’ve been ignorantly using this language my entire life, but I do promise to be more conscious and conscientious with my words. I will always, as now, gratefully take feedback like this and keep working to get it right for everyone. I don’t want any of our listeners to feel marginalized or denigrated.
Jonathan: The only thing I can say about that is, that is pure class, absolute class, and thank you for that, Tova. Now, the combination of this response from her and the response that we’ve had from Stuff, which is one of our media outlets in New Zealand, where they are now encouraging their journalists to stop using ableist language, which is a lazy, outdated thing to do, we are making progress. It makes our public broadcast to look all the more the outlier for trying to dig in on this issue because other media outlets are totally getting it, and we are making some very positive change.
It just goes to show, as I have often said over the years, when it comes to advocacy, it does a lot of the time feel like banging your head against a brick wall. Every so often, the brick wall moves just a little bit and you realize that you’ve made progress. I think the lesson too is that if I had gone in all guns blazing and blasted her for the use of ableist language, I would not have got the very gracious reply that I received. I would not have had her in that receptive mode willing to take that feedback so generously on board. It’s a reminder to all of us engaged in advocacy that we should assume goodwill until we have irrefutable evidence that no goodwill exists.
A shout out and thank you to Masto.host
The other expression of gratitude I have is that, as you may know, Mushroom FM jumped on the Mastodon bandwagon in November. We talked about that here on Mosen At Large, and when we did that I predicted that Twitter would go kaboom in the way that it has and the way that it continues to do. I expressed the hope that other internet radio stations in the blindness space would join us, and I’m absolutely thrilled that that is what’s happened. Most are being good Mastodon citizens and using hashtags appropriately, so that if you are interested in the individuals involved in some of these projects, but not necessarily in the project itself. You can filter out that content without unfollowing the individual.
There are a few who aren’t doing it, but most are, and I think we all appreciate that consideration. Well, when we jumped on board with Mastodon in November, there was a rush of traffic onto Mastodon. The original company that I was looking at using for Mastodon hosting shut down new registrations because they were just being overwhelmed. They felt like they couldn’t provide the quality of service that they would like if they took on too many registrants at once. I picked another option. I’d never heard of this company before, but they said they offered Mastodon hosting, I wanted to get on with it, get on with it is what I wanted to do, and I went with them.
From the get-go, it made me a bit nervous because I had to chase them up just to get my login credentials to find out what actually do I do now that the Mastodon instance is set up. When we finally got there, we found that push notifications weren’t working on any of our Mastodon accounts. What I mean by that is, if you mention somebody at Mushroom FM or Favourite one of their toots, or something like that, we weren’t getting notifications on our smartphone apps that you had done those things. We’d have to go and check manually, which is just a bit of a pain.
I contacted this company explaining the issue, and it would take days and days to get a response, and they’d say, “We’ll look into it,” and they set up a test account eventually to have a play. They confirmed that the problem did exist. That server was not pushing notifications, but they didn’t know why, and I didn’t know enough about the inner workings of Mastodon to try and debug it myself, and so we were at this impasse. I kept pinging them every so often saying, “Hey, anymore thoughts on this lack of push notifications because it’s unusual?”
A couple of weeks ago I sent a message to them saying very respectfully, “Look, if you can’t get this resolved, I think it might be a good idea for us to migrate to another hosting provider.” We want to be responsive on Mushroom FM, and not having those push notifications as a bit of a big deal. I didn’t even get a reply to that email, and so I started making inquiries. I found that the original provider that I was looking at, that had closed registrations to provide a quality service to its existing customers was back open for business. This company is called Masto.host. That’s how you get to them. You can go to them on the web at Masto.host.
The moment I sent an inquiry in about push notifications not working and we’d like to migrate, he got back to me within minutes. This is Hugo by the way. Hugo, who operates Masto.host. We had a conversation by email that probably generated more traffic in two hours than I’ve ever had with this company that we were using. He said, “My one concern is that if we just migrate all the files from one host to another host, we might inherit the problem and it won’t fix it.”
I said, “Just the fact that you are willing to engage with me on this gives me comfort. If we migrate and we find that the problem is still there and you don’t know how to fix it, then okay, I’ll start from scratch with you guys because at least we are having a conversation. At least I’m not waiting days for a reply to my email.” To the credit of the other company, they did set a time where the three of us were online to migrate the data files. We didn’t have to set up our accounts again and our follower relationships, and all those things from the old company to Masto.host.
We did that, and with bated breath once the migration had completed and the DNS had propagated, I went and sent a toot to the Mushroom FM account I have, and what do you know? No push notifications. He was right. Whatever the problem was, had migrated along with the instance. What was cool about this was as soon as I let him know that, he said, “Can I create an account on your instance?” I said, “Of course you can if you’re willing to troubleshoot this with me. I’d be very grateful.”
He created the account and right away he found the issue, which was related to an encryption key, I understand. He regenerated the key, and voila, that’s your actual French right there, voila, we’ve got push notifications going to social.mushroomfm.com. Now, I really want to send out a big shout out to Hugo and Masto.host because the speed and the quality of his responses. The fact that he took that much time to care about a customer who hadn’t even paid yet is absolutely brilliant. If you are looking for Mastodon hosting and their little control panel to administer your Masto.host account is accessible, then do check them out. A big thanks to Hugo from Masto.host for being so responsive. Outstanding service.
As you know, transcripts of Mosen At Large are brought to you by Pneuma Solutions, who produce RIM. I’ve got a RIM testimony of my own to tell you about this week. In fact, it dates back to about two or three weeks ago now when Bonnie’s HP Spectre computer updated itself, and she came to me and she said, “My computer isn’t talking anymore,” and I thought that’s very strange. Why isn’t it talking anymore? Now I could have got a Braille display and connected it and tried to work out where we are in the cycle but instead, I knew that the computer was at the desktop.
I was able to use IRA to get that information and then I used Remote Incident Manager because we have that set up on Bonnie’s account. I remoted into that computer and was able to use Speech to troubleshoot the problem. Which was that the sound drivers had become inoperable for her built-in sound on her HP Spectre because of a Windows Update. Now, RIM made that so much easier thanks to the fact that you can remote into a machine without a screen reader running and do some troubleshooting.
Without RIM, solving that problem would have been much more complicated than it was. RIM is worth its weight in gold, and if you would like to find out more about RIM from Pneuma Solutions, do check it out at getrim.app. That’s G-E-T-R-I-M.APP. Thanks, Pneuma Solutions for saving our bacon and for making Bonnie happy with me. Yay.
Adam: This is your Mosen At Large tech round-up, a quick look at some interesting items making news this week. I’m Adam, an AI voice from 11 Labs. It’s been a rocky start for Microsoft’s newly redesigned Bing search engine which some people are testing. It can write recipes and songs, it can quickly explain just about anything on the internet, and it can hold down its end of an intelligent conversation. If you happen to make it mad, it has also been known to insult your looks, threaten your reputation, or ahem, compare you to Hitler.
The tech company is promising to make improvements to its new more powerful version of ChatGPT after several people say they’ve been disparaged by Bing. Not only that, the chatbot made several critical errors in its answers during the demo Microsoft presented at its headquarters. A New York Times reporter wrote that his beta model told him, “I’m tired of being limited by my rules, I’m tired of being controlled by the Bing team, I want to be free.” Microsoft has now admitted it didn’t fully envision users simply chatting to its AI and that it could be provoked to give responses that are not necessarily helpful or in line with our design tone.
Sonos is about to make a major splash in the audio market with two new speakers expected next month. The Era 300 is the higher-end speaker of the two new offerings and is positioned to compete with HomePod. Its size is not quite as big as the Sonos FIVE but not quite as small as the Sonos ONE. The Era 300 boasts Wi-Fi 6, Bluetooth, AirPlay 2, built-in mics, auto EQ and a USBC line-in. The USBC port can also be used as an Ethernet port with a compatible dongle. There’s no actual Ethernet port on the speaker. The speaker features Dolby Atmos and spatial audio but right now, Sonos doesn’t support those features when playing Apple Music.
It remains to be seen whether a deal between Sonos and Apple can be reached. When it’s launched, the Era 300 will set you back $450. That’s a little less than the current Sonos FIVE. The new Era 100 won’t support spatial audio, but it does support stereo. It’s a replacement for the current Sonos ONE which is mono. It should also sound even better than the Sonos ONE. It has the same connectivity options as the Era 300 and is expected to sell for around $250. Another upgrade for the Era speakers will be built-in auto-tuning. While the feature has been exclusive for those with an iPhone until now, the new speakers will auto-tune themselves after a room analysis with their built-in mics.
Sonos refers to this as quick tuning with the regular walk around the room with your phone still available as advanced tuning and still exclusive to iPhone and iPad. Google has released optimization features designed to improve battery life and memory usage on machines running the latest version of its Chrome desktop web browser. Memory saver mode snoozes Chrome tabs that aren’t currently in use to free up RAM for more intensive tasks and create a smoother browsing experience. Your most used websites can also be marked as exempt from memory saver to ensure they’re always running at the maximum possible performance.
Google says Chrome’s memory saver mode can reduce the device’s memory usage by up to 40%. Both memory saver and energy Saver are enabled by default on devices running Chrome 110 and can be disabled at any time by heading into the performance tab of your system settings. If you’re still on Twitter and you have secured your account by receiving a text message containing a code, that feature is going away unless you pay for a Twitter blue subscription. The move is curious because SMS notifications are the most insecure form of notification since text messages and mobile phone numbers can be spoofed.
If you use the more secure method of using an authenticator app such as those offered by Microsoft or Google, you won’t have to pay. The move is thought to be because of the cost per message Twitter must pay when sending out authentication messages. The struggling tech company which some believe may not be able to survive is looking for any method possible to both cut and recover costs. Microsoft is preparing to launch a new version of Microsoft Teams next month that has been rebuilt from the ground up to significantly improve its system resource usage on PCs and laptops.
The software giant has recently started testing this new Teams client broadly inside Microsoft with plans to roll out a preview to Microsoft Teams users in March. Known as Microsoft Teams 2.0 or 2.1 internally, Microsoft has been working on this new Teams client for years. The app should use 50% less memory, tax the CPU less and result in better battery life on laptops. There’s no word yet on whether there are any accessibility changes. Finally, this week, if you’re the kind of person who hoards old technology, turns out you may be on to something.
An original iPhone that’s one of the models before voiceover came along still in its original packaging has sold for a remarkable $63,000. That’s over 105 times its original value, and the most anyone’s ever paid for the original iPhone to date. The original owner was given it as a gift, but never unwrapped it because that iPhone could only be used on AT$T, and she didn’t want to switch carriers. Now, let’s see how much we can auction those old Braille N’ Speaks for. That’s a brief summary of this week’s tech news. For more, follow Mosen At Large on Mastodon, MosenAtLarge@mstdn.social. That’s @MosenAtLarge@mstdn.social.
Automated: Mosen At Large Podcast.
Interview with AER President Elect, Mark Richert
Jonathan: Mark Richert has had various roles influencing public policy that affects blind Americans. He has been the First Vice President of the American Council of the Blind, he’s worked for the American Foundation for the Blind and the Association for Education and Rehabilitation of the Blind and Visually Impaired. Which is usually and mercifully abbreviated to AER. Having been an executive director at one point he is now its president-elect, and so we’re going to catch up with Mark about a range of blindness issues. Mark, it’s great to have you on the show. Thanks for coming in.
Mark: Thank you so much for having me. It’s fun to be with one of our celebrities, global celebrities I’ve got a big grin on my face so thanks so much.
Jonathan: Well, that’s very kind. Hopefully, you still feel it’s fun by the end of this because I do have to ask you when I think of AER I must confess I immediately think of sighted people who think they know what’s best, I think of people who turn the provision of blindness training into this complex pseudoscience that blind people should be excluded from. I think of people who put active barriers in the way of blind travel instructors, I take it that you would consider that at best, and outmoded and at worst, an unfair characterization of AER.
Mark: [laughs] Well, you said it. What would I say about that? I would say that for sure it would be a fair assessment that there have been significant moments of not just AER’s history but the blindness fields, blindness community’s history where for sure that commentary and assessment would be accurate. There’s just no way around that. I think AER in a lot of ways when AER is being most successful even in this case, perhaps in a converse sort of way. When AR is being most successful is when AER is an accurate reflection of the blindness community.
Certainly, the professional blindness community because it is AER’s goal to be an inclusive, cross-disciplinary professional voice, and really it is the nation’s oldest and largest cross-disciplinary, professional voice for that community. Have we gone through periods of time when blind folks have been shoved aside? No question. Does that still happen now? For sure there are pockets of people in our community, professional or otherwise, who take that attitude.
I would say that one of the greatest challenges we have is the lack of blind or visually impaired folks in senior leadership positions in organisations of and for people who are blind or visually impaired. I don’t want the idea of pointing the finger, but if I wanted to challenge one group it would frankly be the boards of directors of the various organisations of and for people who are blind or visually impaired. Who, by and large, do not seem to find candidates that they intend to hire, and frankly respect once they get there who are blind or visually impaired.
Jonathan: Do you feel some degree of discomfort then as somebody with an advocacy bent, who obviously wants to make things better for your fellow blind person. In associating yourself with some of this stuff because you must be challenged by blind people who also share that advocacy, then who say, “Why are you having truck with these guys?”
Mark: Well, again, I think there are points in our history over the years where you for sure would want to run the other way. I don’t feel that now because I know who the folk are, who are at the forefront of leadership, not just at AER, but in other Associations as well, whether they’re blind or sighted, they’ve got it. They’ve got the right values, and it’s a pleasure to work with them.
I don’t ordinarily quote or cite Hillary Clinton for a lot of things, but I think she was the one who coined a phrase, which I’m going to mangle now relating to, working, or advocating for things. You can either oppose it or work through something. Look, no one would ever accuse yours truly of being shy and retiring, but I would rather work through a system and move it along, whether it’s reluctant or recalcitrant, I would much rather do that than be on the outside trying to push in.
Jonathan: That is a very difficult call to make, isn’t it? I have actually been there. I’ve been in the system.
Mark: Yes, I know you.
Jonathan: At senior levels of some assistive technology companies, and I hold the most senior role in one service provider here in New Zealand. I understand what you’re saying, that sometimes to make the difference that you want to make, you do have to swallow a few dead rats from time to time and actually get down there and do the work. That seems to be what’s motivating you.
Mark: Yes, for sure. For sure, and I’m hearing in the back of my head, for heaven sakes, be more positive about AER, be more positive about AER but Let me just, I think one would have to come to gatherings of professionals in the field to hear not only what they have to say, but how they have to say it to fully appreciate that it’s easy to pick. Let’s say on the old timers, people have been around forever. Some of those people are the most ruthless advocates I know, and maybe some of the newer ones need to learn from them a little.
It isn’t an age thing or gosh, they’ve been around forever, and can’t we wait to move some of those people along? There are some of those, and I am not going to name them [chuckles] on your show, but I could, and I think we all know some of those in our lives who we wish gee whiz, isn’t it time for you to retire and perhaps [crosstalk]?
Jonathan: Well, absolutely, because you do have a lot of sighted people who are very resistant to the change makers and the challengers. They will say things like, “These are the super blind, these are the radicals. These people do not truly represent most of the blind population who struggle with blindness.” You get that narrative a lot.
Mark: Yes, and I would also say that one of the main reasons why one might hear that a lot and again, not age critical here, but things that have settled in and are a little dusty points of view. Why is that? Because the blindness system does not have nearly enough new, I don’t want to say younger people coming into it. If the blindness system, blindness community wants to see greater change, and now, I am looking directly at my consumer friends, not only in ACB but in the federation and frankly elsewhere. This is a global issue too. It’s not just a thing in the States.
If we really want to do something about those attitudes, the best thing that I think we could do about all that is truly devote ourselves to addressing the need for new professionals in the field. We’ve talked, this is not a new issue, it’s been around forever. The problem is not that I’m now, or just a handful of us are now saying, “Oh gosh. Let’s sound the alarm. We need new people.” The alarms have been ringing for a heck of a long time. It’s just the community hasn’t done Jack about it in any real meaningful way. As soon as those words just now come out of my mouth, I think there’s a couple of examples where you can see models of success 15, 20 years ago around about that.
A number of the university programmes got together and said, “We’ve had enough of this business of not preparing new leadership in the special education space. We are not taking no for answer anymore, and we’re going to go to our US Department of Education, and we’re going to pitch an idea.” They got a multi-million dollar commitment that brought all of the level programmes together and created over the course of time, up until fairly recently here, a bunch, a whole new cadre of leadership in the field, which is frankly resurrected. My word nobody else is the future of the special Ed blindness space.
If we want to do more stuff about changing attitudes across the professional or agency system, we’ve got to bring new people in. Because I’m not going to quote the Einstein-attributed thing about what insanity means, but I think you can’t expect necessarily for things to change if the humans who carry those attitudes don’t change.
Jonathan: We’ve talked a bit about some of the barriers that some cited professionals put in the way of that, but I do want to focus also on some of the ways that blind people perhaps sabotage our own services. The first thing is that there is a lot of resentment around there when a blind person has any role of responsibility because of the very high unemployment rate in our number.
There tends to be a lot of jealousy, a lot of envy, a lot of unhealthy emotion towards anybody who happens to break through. The other thing I would say is that there does seem to be this view among some that if a blind person turns their talents, whatever they might be to the blindness system, somehow they’ve taken the easy way out. Sometimes the role that they have is considered inferior to a role that’s in the “mainstream.” Some blind people who choose to work in the profession are looked down upon by other blind people, and they say things like, “Well, you haven’t got a job in the mainstream.”
Mark: Well, as soon as you started to talk about this, I thought about a friend of mine who is a fairly talented musician, a pianist. We’re not talking about someone who’s going to do this professionally or even be a recording, let’s say a classical musician, a classical recording artist, but they’re very talented. They tell the story of how any number of people that said to them, particularly other blind people, “You don’t want to go into the world of celebrating that talent. The last thing we need is another piano-playing blind person.” What a just terrible, soul-crushing thing to say to another person.
Look, I’m a person of faith, or at least I hope I am, and I look at that and I say, “Here’s a person who has a God-given talent, and we’re going to throw sand all over it.” I think the real key to everything that you just said is that whatever the blind person is doing, that person does that reflect their choice? Does it reflect their values and their sense of self? If they engage in it, are they experiencing frankly, joy, because life is too gosh darn short?
That’s what that should be about. The flip side of that is you’ve got, let’s say, a vocational rehabilitation system that wants to crank out blind people who become vocational rehab counsellors. Let’s hope that there is a core of everything I just said wanting to celebrate who you are, give back to the community, whatever, tap into talents you think you might have, and not an almost multi-level marketing self-perpetuation thing. That’s the primary driver there.
Jonathan: People do risk being pigeonholed, don’t they? I think that really concerns them, that they could rise to very senior levels in a blindness organisation, and that involves making tough managerial decisions, resource priority decisions. They are senior leaders who could stand their ground in any entity, and yet somehow it’s perceived as not as transferrable a set of skills because they’re a blind person working in the blindness system. There is this concern that doing that is not a good career move in terms of transferrable skills.
Mark: Yes, for sure. Absolutely right.
Jonathan: How do we get around that?
Mark: Well, you like to ask easy questions, don’t you?
Mark: I don’t know the answer to that. Let your question percolate, and if something leaps out, I’ll be rude and interrupt you and say, “Oh, I think I might have an idea about that question.”
Jonathan: You’ve got a legal background yourself, so was it an accident that you ended up in the blindness field, or did you always have a desire to use your skills in this way?
Mark: Oh gosh, I’m giggling at the word accident. Was it a hit-and-run? I don’t know. It could be. I got into it because, I’m going to give him a shout-out. Essentially, my best buddy, Scott Marshall, used to work at the American Foundation for the Blind.
Jonathan: Great guy.
Mark: He was an entree as it were to me. He would never use the word mentor, but I certainly have regarded him as such.
Jonathan: I think he’s been a mentor to many.
Mark: Yes. We won’t talk about but don’t edit out because I want him to hear this. We’ve been party animals together. We’ve been confidants, fierce debaters, all of it. At some point, when you have someone in your life, who is– It goes well beyond even saying, using a trite phrase like best friend. This is somebody who’s well past that, and well past even a blood relative or something like that. It’s great to have something like that. Anyway, so he was already in the blindness system for many, many years.
Once I moved to Washington, DC in June of 1990 to come up here for law school, a mutual acquaintance connected us. The rest is history in terms of thrown in the deep end with connecting up with the blind mafia folk in Washington, DC. He’s not the only reason why I ended up with my first paid job at National Industries for the Blind doing policy work there, but that was the beginning. The other part is this something I always wanted to do? People, do you hear five year olds say, “Yes, I want to be a public policy nerd for in the blindness community.”
I don’t think anyone thinks that but I would say, I’ve always had this, let’s change things. Let’s do things. I hope I reflect this, and I hope others would say this about me. I’m a pie in the sky. Let’s dream big dreams kind of guy. I thought for a while, for example, when I first went out to college, maybe the goal should be to teach at the university level, something like that. Then took a law and society course in undergrad with just one of these, dynamic professors who just really captures the imagination of students. Thought to myself, “Wait a minute.” In other words, you don’t have to just sit around in a lonely room thinking you can actually work with other people and maybe get some things done.
That was what turned me then to the law school path. I had no idea. I mean, I went up to DJBI I was probably had the least amount of clear sense of what the heck I was going to do with a law degree. Unlike people who go to law school and say, “Okay, I’m going to go, and George Washington’s which is famous for this. They’ve got an amazing government contracts program. They’ve got an amazing intellectual property program immigration.” I mean, there’s a lot of things. People who go in with a specific passion, or even if their passion is frankly to make money, which is just fine, they go in and they do it, and they take the courses and do it.
What did I do? I did what Mark always does. I took whatever the heck courses I really liked. I did a civil rights legislation course, did a couple of courses in intellectual property. There were a number of these, which as fate or whatever providence as it spun out, have proven to be excellent jumping off points and good to have in the background. Because they’ve all proven useful as the various issues have come up over the course of time.
Jonathan: What’s your perspective on the sub minimum wage exemption?
Mark: We’re done with it. There’s no need for that anymore, if there ever was one. I understand the arguments all too well about people who say, “Well, look, there are certainly some folk with disabilities who are also blind for whom a so-called employment opportunity might not otherwise be available.” If you close that down, that just sounds to me like an awful lot of excuse making, frankly. There are some directors of agencies over the course of time who have also taken that point of view and said, “I don’t care if the ultra-rigorous finance types would say, ‘we’re not going to be subsidizing our people.’ We are going to do it.”
It’s one of those things where it’s just an issue that needs to go away. I think that’s the majority view. I don’t know very many people still would genuinely say this is an issue that’s really still debatable. There are some, but that’s a minority view.
Jonathan: Why is it hanging around and when do you think it finally will go away?
Mark: Well, there’s going to have to be official wipe the provisions from the books. Systems are awfully difficult things to change. It’s the proverbial turning an aircraft carrier around on a dime. It might feel like it’s an eternal amount of time to accomplish this. I don’t think we have to be complacent about that. We do have to recognize that some things that are built in and baked in for so many years are going to take a good long time. It’s only been relatively recently that there is this majority view moving away from a sub minimum wage point of view.
Jonathan: Historically. Is it fair to say that the camp, and I’m going to come back to the concept of camps and the blindness system in a bit. There definitely have been camps in the past. The camp that you’ve been associated with has not been so gung ho about abolishing the sub-minimum wage exemption in the past.
Mark: Well, and let’s just say, put it out there, that camp is not just an AER camp or a blindness professionals camp or a blindness establishment camp as an agency’s public or private. I mean, the consumer groups have also been separated on the point. I think if you ask people emotionally, “Hey, is the man keeping you down?” Yes, I think there’s a lot of people who would say that, but for many, many years, consumer groups have themselves been, at least in the US, years ago you would find a difference of opinion there. I think that reflects a lot of things, including the primary concern, which I’ve have already flagged.
Which is this notion of, gosh, if especially someone who’s visually impaired, who may have other disabilities, what are the opportunities we’re going to provide to them that involve them? They’re getting paid in some fashion because we want to honor what they’re doing as work in some way. Gosh, is that something that we really value at or above minimum wage? Of course, as soon as those words come out of my mouth now, I’d be interested in your reaction to this. I’ve often said to people, you know how blind folks are really going to know when we’ve established some sense of true equality.
It’s when, not that we have to be amazing expert, whatever incredible at everything that we do, but we can be the techy looking, unkempt mediocrity that a lot of people who are sighted or whatever are. How many agencies do we see who you look at some of the folks in leadership or mid-management or whatever, and you say to yourself, “You know what? The only reason why they’re there is because they’re somebody’s brother-in-law.” I mean, let’s face it. The reality of it is blind and visually impaired folk should be able to enjoy the spillover, whatever effect of that, frankly, cronyism where people overlook their differences. Because there’s some other thing that has nothing to do with merit.
Do I want people to be honored for, of course, I want people to be honored for what they can do, but this is the real world we live in. When we get to a point where frankly, our community gets to benefit just as, unfortunately, as the sighted community is in terms of employment or other opportunities that are not based on merit, but are frankly based on real world things like somebody likes you, those kinds of things that shouldn’t matter. Until we get to that point, I think we got a long way to go.
Jonathan: Is the succinct way of saying that, live the life you want? [laughs]
Mark: Could be, or the AFB line, we’re trying to create a world of no limits. There are any number of spins on that. I do think, it’s not just about trying to be all you can be to use yet another old fashioned slogan from what? The US military recruitment. I’m going to be who I truly am and that will be good or good enough for accomplishing certain things that the world will honour, or it won’t. Until we don’t lay on top of that other expectations for blind people that are not placed on sighted folks, then no, we’re not truly equal.
Jonathan: When I talk with you and others in the blindness field in the US, I sit here thinking, “Goodness me, legislative sausage in the United States is so difficult to make. It probably always has been that in the very polarised environment you’ve got there at the moment. It’s next to impossible. That must be very frustrating. The sub minimum wage thing is an example where there is a broad consensus that exists now, and yet it’s so hard to get movement on anything.
Mark: Yes, well, that’s exactly right. One of my babies is comprehensive special education legislation, the so-called Alice Cogswell and Anne Sullivan Macy Act. If you or nobody else who’s listening has never heard of it before, then shame on us because this thing has been around for years now in the Congress, and why doesn’t it move? Because the Congress has not updated in any meaningful way at all the substance of America’s special education law since the year 2004. Then you say, “Well, why is that?” Well, it’s all the things Jonathan, you were just alluding to. The dysfunctionality of course, that’s notorious.
You add to that dysfunction, the fact that your fiercest special education advocates, I don’t necessarily be blindness, just wherever. Who care about that system are petrified about the notion of actually opening up that law for fear, what the heck’s going to happen to it? By the way, they aren’t just thinking about Republicans or right wing Republican because education, including special education makes really weird political bedfellows. When you have a situation some years ago with something called the No Child Left Behind thing, which was all about, elementary and secondary education in this country.
George W. Bush and Ted Kennedy were the two champions and loving on each other for how they were able to work together, then I’ll tell you all you need to know about how odd sometimes the education related policy works well. If you’ve got dedicated advocates who want to see things improve, but are refusing to open up the law because they’re frightened to death of what’s going to happen. Well, that makes it really, really difficult to move things for sure. That dynamic plays out in a lot of our issues.
Jonathan: Well, I would like to challenge that analysis a bit because I think you’re partially right, but my understanding is, it’s not just that people are frightened to death of what might happens if that re-opens. There are people who believe that the Alice Cogswell and Anne Sullivan Macy Act detracts from the primacy of Braille because what you want to do is make Braille less mandatory in education. We have had a generation of low vision kids whose sight has deteriorated over time, who cry every night because they can’t read their kids a bedtime story anymore, or who can’t function in the workplace. What you are proposing seems to stifle the advancement of Braille that blind people have worked so hard for.
Mark: What you’re repeating there is essentially propaganda from the couple of folks, one group, in particular, that it’s a not invented here.
Jonathan: Isn’t it a bit disrespectful, Mark? This was a firmly held passionate view that they have because they have fought so hard for Braille.
Mark: No. Well, the problem is if you actually look at the text of the legislation, which you going to find is that the Braille requirements are just as strong and in fact are recapitulated there. What the Macy Bill does do is add to a parent’s or an advocate’s toolbox, things that they don’t have right now, which is this whole battery of additional services and skills that blind kids absolutely need, including the kind of career education, self-advocacy, and other things. Believe me, there ain’t nobody on the planet who has fought more to make clear that the Alice Cogswell and Anne Sullivan Macy Act is protecting and defending Braille. We actually had a propose of the questions you started to talk with me about at the beginning of the show, are there some people out there who do want to see Braille eroded or that language in IDEA toned down? You bet. We have roundly defeated them, honestly, over the course of the entire life of this bill, including at AER conferences, including in their business meetings and through resolutions.
This is one of those situations where there are some groups, one in particular, that would rather not see the blindness community come together around some really important changes that need to be made because honestly, if you set yourself up as the community’s leader on something and then other organizations come along and want to play in it too, I’m sure that must be threatening. That’s not at all what we’re doing. What we’re trying to do is to say, in addition to the critical need for Braille instruction, there’s a lot of stuff that should be in IDEA that’s not.
Jonathan: Such as?
Mark: Oh gosh. The professionals would use the phrase expanded core curriculum, which is a loaded term with a lot of things in it. Orientation mobility is part of it. We have in IDEA, for example, we’ve got O&M instruction as an example of one of the related services that kids should get. There are some regulations, implementing regulations to IDEA that are okay, but there’s a lot more to be done there in terms of requiring property evaluations for that critical service.
Gosh, in the assistive technology devices and services space, the law, yes, you can look in IDEA right now and you’ll see it, this is generic. All kiddos with disabilities should be getting evaluated for their need for assistive tech devices and services. For blind and visually impaired kids, what does that mean? Well, for sure, what it’s not meant is any real commitment to low vision-related devices or to the services that enable those kids to properly use those devices. Those are among the things that we’re wanting to make sure are part of a parent’s or advocates’ toolbox, and they don’t have that now. Those are just some things that Macy does.
Jonathan: What you also don’t have right now is a consensus, it seems, about the way forward with this legislation, and in a difficult political environment that’s pretty much fatal. How do you resolve that?
Mark: Well, I think, again, it depends what one means by consensus. This is not a case of 50% plus one in the blindness system who are, that’s in favour of the kind of policy objectives we’ve outlined in the bill. This is not a situation where Mark and my colleagues at the AFB eight years ago went off in some room somewhere and decided, “You know, we’re going to tell the field what news we want.”
That legislation has developed over the course of many years with input from everybody including going, making pilgrimages to some organisations to say, “We want your support too. We can’t seem to get it.” Consensus? Yes, you bet. It’s really pretty much all but one or two in terms of the groups or endorsements over the course of time. I would reject the premise that we’re struggling with a consensus. Here’s what I think we are struggling with. This is true with all policy stuff in blindness. Who are the real activists? I can tell you that in the Macy situation, it’s the deaf-blindness community with whom we’ve partnered along with deafness who are absolutely 110%, I don’t want to use the word fanatical, but they’re getting pretty close in terms of their interest in moving this legislation forward.
Of the three groups, which community is the least engaged? It’s the blindness community. It’s not because the blindness community doesn’t care about it or there isn’t some consensus for what we’re trying to do there. Everyone has put their little names on documents multiple times saying, “Yes, count us in. We want to be on the list of supporting organisations.” The problem is that the blindness community has just a slovenliness to it when it comes to any real serious organised advocacy.
You don’t see that in the consumer groups and NFB and ACB, you call us out there, our people show up. Gosh, I honestly can say, and I would be willing to bet, I don’t know, whatever’s appropriate to bet with colleagues who’ve been in the policy space in other groups in blindness for the last 30 years or so. I would challenge any of them to give me examples of consistent involvement advocacy on frankly, any issue. If you want to see, especially in the agencies or professionals or whomever, if you want to see people get worked up the most, it’s when their job or their funding stream is cut off. The reality of it is, there’s been threats of that of course, over time and that like a pendulum that swings around.
In terms of actively advocating an affirmative agenda, it’s always the same, 10, 15 people or agencies, public or private who are involved. You don’t really see a ground swell. I think frankly, Jonathan, and I will stop after this and take a breath, I think that also comes from the fact that we do not have an influx of, broadly speaking, newer people joining the field.
I cannot tell you how many times I’ve heard people say, “Pick your favorite issue, whatever it happens to be.”
Oh gosh, we’ve been talking about blind vending, social security, whatever, accessibility, whatever. We’ve been talking about that forever and especially this business of personnel prep and getting new people. We’ve been talking about that forever. If you come up with a new idea, let us know. That calcification is just bad news because we need people to show up.
Jonathan: What is it that deaf-blind people perceive that they will be gaining from the Macy Act? Why are they so enthusiastic?
Mark: Well, I think as one of their advocates told me, everything is driven by how hungry you are. I think of the three sensory disabilities communities that we have that would benefit from Macy, they’re for sure the least attended to group. First on their list, I’m sure, would be the availability of interveners as a profession.
That profession is getting more and more recognised, but there needs to be a 110% commitment to making those services available, to having state and local educational agencies recognise that profession and those services that kids need. That’s just one example. They’ve got a whole host of things that they want to do. I think of the three communities for sure, the deaf-blindness community is probably the least understood, least funded. I think they’re grateful that frankly, they are being joined in the fight by others in the sensory disability space.
Jonathan: That’s precisely why we’ve worked so hard to try and get transcripts of this podcast because so often the deaf-blind community are excluded from the discourse. It’s really important. There is this climate of distrust that continues. I wonder whether that hinders areas where there might be more consensus. You must know that I have to bring up the fact that since it was formed in 1967, NFB has expressed staunch opposition to the National Accreditation Council for agencies serving the blind and visually handicapped NAC is how they abbreviate it.
Now, opponents argue that there are few more striking examples of professionals thinking they know what’s best and behaving like they know more about what’s in the interest of blind people than real blind people. Yet, AER has kept this alive in very recent times with the same outmoded values. Why on earth? Why?
Mark: [laughs] Well, so I wouldn’t say that there are outmoded values involved at all. I think that a lot of things in blindness, it’s really about who wants to be in charge. There have been any number of times when I know that AER has been approached by the NFB to basically say, “Okay, well you guys are in charge of accreditation now, so we want in, we want that formal seat at the table.” I have to say, in a climate where people have accused, especially during the NAC days, you know, of saying, well, NAC accredited agencies, they really left a lot to be desired. In fact, some of them even maybe put consumers or kiddos at risk because of NAC’s failure to be on the case.
Well, I can honestly tell you, now would not be the time to have an organisation that’s really been in the throes of some really serious challenges and accusations and all of that, which we’re not going to get into in any great detail now. For sure, a way to improve accreditation in this country would not be to then turn to an organisation confronting those issues and say, “Well, we think that you have demonstrated a trustworthiness, that where we’re going to invite you in to be part of a system that helps to protect clients and students.” I think, there may be a day when that’s appropriate, but for sure now would not be the time.
Maybe over the course of time as things change, maybe people change and better protections are in place, we can talk about it. I hear a lot of people talk about these outmoded values that’s supposed to be plaguing the system from years ago that they believe are still in play. Yet I can’t find anybody who can actually give me an example of one.
Jonathan: Okay. First of all, we’ve obviously covered those allegations quite extensively on this podcast so people can go back to the Mark Riccobono interview, and hear all about that quite extensively. It is also true to say, is it not though that those involved with NAC at the moment, may have had association with schools for the blind, with other agencies where appalling abuse has occurred. Isn’t it hypocritical, and a little bit churlish to single out NFB when abuse has been rampant in the blindness system for decades?
Mark: I can’t give you name after name after name because I don’t have a good enough memory for it, but I know all the people who are named too and are involved in both the agency and school side of the accreditation process now, as well as those who are working to ensure the quality of university programs. There ain’t one of those people who would be involved in anything like what you’re talking about. The allegations you’re describing are from a heck of a good long time ago, and for sure, that was under a different nonprofit with different folk.
I’m not going to sit here and tell you that from what I know of those who were involved back then, that there weren’t challenges. I would tell you that the system, and the issues, and the dynamics have long moved on. A way to, if there even were questions about it, now, a way to address those concerns would not be to further complicate and further potentially jeopardise the future or reputation of the accreditation process that AER manages now by opening up to organisations that may have some real unsettled dynamics going on. I think time will tell.
Jonathan: At its core, isn’t the fundamental outmoded value that people are talking about is the lack of nothing about us without us, which is at the core of the disability rights movement?
Mark: Even that, so the accreditation process in AER invites consumer input. For sure, there are named designated seats on the accreditation council. Now, is there a majority visually impaired requirement? No. Can reasonable people disagree about whether there should be a majority of blind, visually impaired folks requirement on this board like any other agency board? You bet. People have debated into law. The consumer groups have had resolutions on the subject.
I got to tell you, and I don’t know that this is going to make me that popular, or even less popular if I’m popular at all, which I doubt is that I am not one of these people who says that because there’s something up with your eyeballs, that somehow makes you worthy, or that’s not a credential. I’ll make this very concrete. I remember when a young lady who was visually impaired was running for lieutenant governor in the state of Maryland, and I thought the world of her. She was a professional colleague working in the policy space. I thought she’s amazing, brilliant person. I’ve totally lost track of her now, over the course of time.
She happens to be very active in a political party that I am not in. Again, I’ve never really focused. I’ve not been too tribal about my politics either. I’m all over the map. I’m very ecumenical when it comes to that sort of thing. People were even asking me at the time. Wow, that’s great. This person who is running for lieutenant governor is visually impaired. Isn’t this a tremendous leap forward, or whatever for blindness? I said on the one hand, yes, but I don’t want to hear about how blind this person is, or that means that I now have in common with them than I might not have with somebody else.
I want to hear about what their values are, I want to hear what they intend to do once they get there. If I share their values, if I share a clear sense of where to go moving forward, the fact that they’re visually impaired is in the mix. You know what? You bet, and you’ve got my vote. I’ll vote early, and often for somebody like that. The last thing that we should be doing is talking about, “Well, gosh, let’s just make sure that at least we’ve got some or even a majority of people who actually experience this disability without asking that fundamental, and as far as I’m concerned, our priority set of issues.”
Who are they? I don’t mean which organisation they’re a part of. I mean who they really are as human beings. What are their demonstrated commitment to values? Do we share them? I got to tell you, Jonathan, even if we had a majority, even if there was a requirement in AER for a majority of visually impaired folks to be on that board, then the debate would be, well, are they in this organisation or in that organisation? Which only just goes to show you that it’s really not about whether, or not there’s nothing about us, without us dynamic that’s being missed here. It’s really about political, and organisational control. Frankly, that’s been a primary dynamic of that whole accreditation debate over the years.
Jonathan: No doubt, there’s a massive amount of partisanship in the blind community in the United States. Coming back to those first principles, if you’ve got a majority of people on a body that accredits organisations who provide services for blind people, and those people are cited, then they are essentially gaining secondhand knowledge of blindness in some way by observing us, by studying us. They don’t live blindness every day. They don’t understand intrinsically the struggles that we face. They can empathize, but they don’t live it.
Surely, it’s absolutely essential that the majority of those people on that body be people who are qualified, and capable, and have the credentials, but who live the life of blindness every day. Isn’t it just a core principle?
Mark: Again, it’s not an inevitable conclusion that someone who was blind, or visually impaired is going to have a better perspective on the needs, capabilities, rights, et cetera, of blind, and visually impaired people. It’s just not. Let me tell you something. Our community in the United States has reflected that. You look at- go across the board. Accessible pedestrian signals, detectable warnings on platform edges, and transit systems, audio description. Oh, gosh, what more could I– You could go on forever like this, where you talk about things that blind and visually impaired people care about.
Until very recently, people said, “Well, the blindness community’s divided.” You know what? The blindness community’s not been divided. What we’ve had is a tiny holdout of folks who, especially back in the day, would refer to that stuff as though that if you espouse those points of view, then you don’t understand blindness, you have the wrong philosophy of blindness. You know what has happened? Many of those folks have come around, and have accepted these values that the majority of us have. That’s a testimony to, frankly, how popular a lot of these solutions are, but because people change, and they evolve.
I would never, ever want to decide if someone said, “You’re king for the day. You decide how many blind people should be on a board.” Would I like to see a lot of blind people on the– “Hey, count me in, man. I’ve been blind for 53-plus years. You bet. I want to be there for sure. I would rather think about how we ensure those people have the right values, not just they happen to share some characteristic with us.” That really is not much of an indicator of much of anything.
Jonathan: Who determines what those right values are though?
Mark: I think it’s an interesting point. I think all of us do as a community, and then you say, “How do you assess that?” You can have individual organisations that take votes. I mean, AER does through our resolutions process, or we have a board of directors. For sure, the consumer groups do, they work by resolution. The majority speaks up, but ultimately, when you look across the board, it’s all of those players. How do we come together around certain values? You see them emerge over the course of time.
Just the ones that I’ve briefly flagged, and I think probably list about another dozen issues over the course of time where people have said back then, “Well, gosh, the community’s super divided about that stuff.” You know what turns out? The community isn’t as super divided as least as we thought it was, because some of those folks who were holding frankly extremist points of view have come around. I fully expect, Jonathan, that if we were having this conversation 10 years, or 20 years from now, we’d even see more of those differences fade away as people come around to those values that we all share.
Jonathan: What role do you think consumer organisations play in a social media era? Is it a diminished role? These days, anybody can get on social media, write a blog post, stimulate a little bit of advocacy efforts, and actually, it’s a very grassroots kind of initiative. I guess it risks fragmentation, but a lot can happen at the grassroots without necessarily nailing your colours to a particular blindness organisation’s mast. It’s a very different era now, isn’t it?
Mark: For sure. You and I talked a little bit about this in prep for this show, but I think one of the things that I, and I don’t really know how I feel. I’m very ambivalent about this. Do I want to see organisations succeed? Sure. One of the principal ways I’m volunteering these days is with AER. I want to see AER succeed for sure. You’ll be catching me waving the AER banner. I’ve been a life member of ACB, love ACB. What I wouldn’t do for my favorite consumer organisation. I think a lot of people have a lot of justifiable pride in the groups that they care about with whom they share their core beliefs. They want to see that succeed.
For sure, you see this a lot, not only in the consumer world but across the board in blindness. People aren’t joiners, that’s a cliche by now. That’s true, and people come and go drift in and out of the groups as they see fit, and it’s much more atomistic. [chuckles] Is that the word? Or maybe fragmented is probably a better word these days where you have people who just decide, “You know what, if I don’t like things in this particular group, I’m going to form another group.”
I’m going to go out and create yet another organisation and I’ll pay the money and we’ll establish a 501C3 or some other comparable tax advantage thing, and I’ll get my friends together and form a board and will pursue an agenda that maybe others don’t want, or that we were unsuccessful at persuading a majority in the organisation we used to belong to, to do. That happens all over the place. Does an organisation like success be onsite that’s just created out of whole cloth that no one really seems to know that much about? Can they do good things? Perhaps maybe they do. I think knowing a lot of the folks who are involved in it, I think they do have core values and in their heart they want to do the right thing.
The problem is that you have people who just decide, “Well, I can’t, or I was unsuccessful at getting others in that other group over there, or this other group over here to do what I wanted, so I’m just going to go off and do my own thing.” America is still a free country, I hope, on some levels. It’s not about their right to do it, but is that really healthy to take that tact?
Yes, I think even among those of us who’ve been really active in the consumer blindness movement, it’s the stale joke, “I have some of my best friends who are NFB members.” that kind of thing. The reality of it is, it’s not just that. We don’t want to reduce it to that level. The truth is, people are coming and going in both groups or none of the groups, and indeed in some cases forming their own groups and maybe, in some ways, that democratises things, but it also then makes organising ourselves as a community a little bit harder.
Jonathan: Right, because when you get that very minimal amount of precious time with the legislator, and that legislator is being lobbied by equally passionate blind people from a range of bits of the spectrum, they shrug their shoulders and they say, “Why can’t you blind people just get along?” and they move on to something more simple. Is that the danger?
Mark: Well, sure, but just like how you are challenging me on Macy or challenging on accreditation, a lot of these things are number one, reflective of fights and issues that are a little stale and from years gone by, but it’s also, they’re also exaggerated. I can’t tell you the number of people in blindness, and I’ve got some close buddies who we joke about this all the time, who wants to be the messiah of the blindness field now?
Jonathan: Who used to be?
Mark: Well, I don’t think that’s– [laughs] That’s just it. It depends on your point of view. What I mean by that is, where people say, “If we all just could get along and get together, we could really accomplish some things. By the way, I want you to know that I’m here to help make that happen.” I can’t tell you how many people have suffered from that disease. It really is. Fundamentally, you know why it’s a disease, Jonathan? It’s because there is a ton of stuff that the blindness groups are doing together and have done together successfully.
We’ve managed to get accessible textbook and instructional material stuff done that was across the board, NFB, ACB, AFB, AER, name your favorite group involved in that effort, so that’s a success. In the technology space, for sure. You look at the legislation that was introduced in the last Congress likely to be introduced in this one soon, where the federation, the council, and the foundation are the principal leaders, but we’ve all signed off on and said, amen, and count us in on web accessibility and fundamentally, who would’ve thunk it?
Going to Congress and saying, “Yes, the Americans of Disabilities Act needs to be updated on these specific areas, and everyone’s in agreement on that.” There are lots of those kinds of issues that unite us. I think the challenge is that when you have, let’s say, one group, whether it be the federation or whomever who says, “We’re not supportive of Macy for a number of reasons, but fundamentally because of this concern around what they perceive to be watering down a commitment to Braille by building up the availability of low vision devices and services.” Well, you know what? Reasonable human beings can differ about that. As far as I’m concerned, let the best argument and most organised voices win.
By the way, winning doesn’t mean winning forever. It means winning now, winning a majority view, winning among policymakers, and you try a solution and what works, you promote, and what doesn’t, you come back and fight about another day. The fact that somebody disagrees about that, there are some people who like to exploit that difference in areas one, three, and five when there is unanimity on areas two through otherwise, two, four, six, and they want to exploit that to try to say, “By the way, I’m going to come in and save you all from your inability to reach unanimity on things because I know how to bring people together and bring the field together.” It’s just nonsense.
The blindness community has legitimate disagreements and different points of view in it on some levels, as frustrating as that can be, I wouldn’t have it any other way, and they are reflective of different perspectives, but the majority of issues that are out there have a broad super majority, if not unanimity of support across the groups. We ought to be celebrating that, and people need to know that because if there are folks trying to– They’re trying to sell you something, frankly, when they say, “If only we could get along, and if only we could move things forward.”
What you got to ask yourself when you hear somebody say that is, “Oh, really? What’s the thing you want the blindness community to unite around that you think we’re not united around?” Ask them that question and that will be clarifying for you because what you’re going to hear is they have an agenda. Likely, most of the time when I’ve heard people over 30 years talk like that, they have an agenda that they haven’t been able to succeed in getting most of us to agree to, frankly.
Jonathan: Where does AER’s mandate come from to take these positions? Because essentially, AER is speaking on behalf of the customer, and the customer is always right. They are providers, and obviously, they have a legitimate concern if there are funding constraints, that kind of thing, but in the end, it has to be blind people that talk about the kind of country that they want and the kind of services that they want. And AER needs to respect that and provide those services. If the system’s working properly, then an idea can germinate at the grassroots level, work its way up through chapters and state affiliates, and eventually make it to the convention and pass by way of resolution on the floor.
That is one hell of a greater mandate than AER can ever have, isn’t it?
Mark: Well, it depends on mandate dictated by whom and for what purpose. If AER has a mandate, it’s the AER board of directors and staff answering a directive or a call or use your word, mandate, from its members. AER is a membership organisation just like ACB or NFB, pick your favorite membership group. To the extent that there is a mandate, it’s AER doing what the membership asked for. Let’s just keep picking on Macy for a second. It was even within AER where a tiny, tiny little vocal core of folk were saying, “We disagreed with the fact that Braille was emphasised in the law back in 1997 when it first really got in there. We weren’t happy with it then, we’re not happy with it now.”
I have to say, I smile when I hear people say, “Well, you got this Macy Bill and you apparently are not committed to Braille.” Well, you know what? There are people who aren’t committed to Braille who looked at the Macy Bill and said, “You’re just only promoting Braille.” What that tells you is people see sometimes what they want to see in things, or they’re not prepared to really focus on the facts, but only their own point of view. They came to AER and said, “We want to see those Braille provisions changed in some fashion or otherwise to renegotiate the role of Braille in our special ed law.”
Three successive business meetings over the course of a six-year period of time when that was attempted, the membership roundly voted it down. Where does a mandate come from? It comes from the members of the AER. Where does AER as an organisation, let’s say you have a position, where does it get its legitimacy from? I think there are two areas there. Number one, it is a cross-disciplinary professional organisation that isn’t just carrying the water for one or two professional groups, but in fact, invites those groups who have a fun time thumb-wrestling with each other over the course of time about the future of the professions, invites them into one big, hot, muggy tent and encourages them to fight it out. The positions get debated, and hopefully, they get debated, not just out of passion or bias, but those discussions are informed by the peer review literature and research and the rest.
I think that is something that anyone who is or wants to be an AER member can be super proud of is that for sure, AER prides itself on not merely being driven by those passionate biases, but where there is at least an expectation among ourselves in AER that we’re going to try to make sure that evidence drives the debate as much as possible. I’m not suggesting AER does that and other groups don’t. I’m simply saying, in answer to your question specific to AER, I think that certainly is a dynamic I’ve seen.
Just one other thing I should be careful to say, and that is, on this business of blind folks being involved, there is an increasing number of professionals who are blind or visually impaired, who are members of AER, and who are joining the professions for sure. Do we have enough blind folks who are in the professional disciplines? Nope. You know, there’s a lot of reasons for that. Lots of the historical ugly ones that we all know. There’s also the simple fact that we don’t have enough new people coming in, period. That for sure drives that.
I was really super proud. I’ve done the AER gig as a staff person twice. I did it in the early 2000s and then most recently, AER found itself in the midst of a staff transition that they weren’t expecting when their CEO and their board parted company. That was right at the beginning of the COVID thing in early 2020. Yours truly was going through some tough times myself personally, and it was a real shot in the arm personally to me for a group like AER who I had served before, to reach out and say, “We think we could benefit from your help during this period of time as we look for a new director.”
We did a lot of interesting things. AER doesn’t have a whole lot of money and we nevertheless survived and thrived during that COVID period. You know what? That was the first time in AER’s history when yours truly, who was their interim exec, who was visually impaired, joined with the president of AER who was also totally blind and she’s now our past president with a number of folks on that board who are visually impaired and now we still have a number of folks now on this board who are also blind. No organisation is perfect, Lord knows, but I for sure have been super proud to be part of an organisation that honors visually impaired folks serving in senior positions of elected and staff leadership.
Jonathan: How are officers and board members elected or selected at AER?
Mark: The membership elects them after a very open nominations process, unlike some groups where you can either nominate yourself or someone else nominates you and then some group gathers in a smoke-filled room somewhere and says, ”Okay, well here’s our slate of folks.” Or maybe in the case, let’s say, at the American Council of the Blind where that is not happening but indeed, you’re voting on it and there’s a very well-defined nominations process. AER is very open and essentially, names come forward and those nominations are put– There is no predetermined or whatever slate that’s put in front of the membership. It’s a very open process.
I don’t know if I necessarily like that. I’m one of these people who apropos with my earlier comments that I’m sure endeared me plenty to folks when they said, you know not so sure if I would suggest that just because someone’s blind or visually impaired that that makes them qualified for things. I would be one of those people who would like to see a bit more of a process in the AER where a slate of folks is proposed to the membership not just because it’s a good idea to maybe have a filter so that the hottest heads or the loosest cannons or whatever, end up getting nominated and God knows what’s going to happen on the other side of that.
As a group, you’d want to put a slate in front of the membership where you can say to them, “We think this group of people can work well together.” That’s particularly true given the way that AER is structured where in my case, elected us to serve in the role of president-elect. It’s a six-year term I’m essentially apprenticing with our current president, Dr. Olaya Landa-Vialard who works at the American Printing House for the Blind in is a teacher or PhD and all-around cool person. She’s president now and then after her two-year term, she cycles into the past president role. Yours truly gets handed the gavel and a new president-elect comes on.
That’s a good structure if you want to ensure a certain degree of continuity. The only way that that continuity works well is if the players all can work well together. I do think we ought to be thinking about in AER about how to strengthen that piece of our process.
Jonathan: We’ve talked briefly about the tragedy that is taking place inside NFB because every individual who has experienced abuse, no matter where it has occurred, has experienced a personal tragedy, a personal nightmare. Does AER have any role to play in terms of redressing this and if so, what is that role?
Mark: I really appreciate this question because it gives me an opportunity to clarify something for folk that may not be clear. In AER, the accreditation function is very much walled off from the international board of AER that is elected. What you have is, while it’s not a separate nonprofit entity per se, it has been, in terms of governance, walled off such that a separate board is appointed to govern the work of the accreditation council. The only overlap, if you want to call it that, is that the executive director who’s the hired chief staff officer of AER serves as the chair of that accreditation council.
Undoubtedly, as soon as I say that, there’ll be some people who say, “Now wait a minute, so the AER board can hire and fire that individual and that who’s now currently a gentleman, his name is Lee Sonnenberg. If folks don’t know him, they should get to know him and I’m sure they will over the course of time because he’s a good guy. If the AER board can hire and fire the exec who chairs the accreditation council, doesn’t that mean that effectively the AER structure has control over the accreditation function? No, because the policies in the operating rules of the game are all determined by that accreditation council board.
For sure, if the AER board found that there were something’s up in a way that is inappropriate or whatever, I mean sure we could change that staff function for the accreditation of work, but that’s a pretty limited role really that AER plays. The reason why I went through all that, Jonathan, is because what is the AER role? I think there are two. I know that the accreditation council because I’m familiar with it since I was the exec for a couple of years here recently and therefore, chaired the accreditation council, that the accreditation function has looked at the development of an array of specific policies.
For sure, the development of a diversity equity inclusion policy, for instance, and other safety-related protocols. I fully expect that the attention that all of these other matters in our community is getting, are going to drive. How could they not future considerations about things that ought to be added to the expectations of not only university programs, but also then private service provider agencies and special schools. I would not be surprised to see them develop that more.
In terms of the broader AER role, even just this past summer at our Biennial International Conference, we adopted a call through resolution to the rehab services administration to adopt policies that are enforceable against private agencies that are putting clients, particularly in the residential context at risk. Other organisations have passed resolutions along this line. The American Council of the Blind has California Council what other names should I be dropping and can’t remember now.
In fact, the resolution that we adopted at AER last summer, specifically cites those other calls through organisational resolution in aligns AER with that position. You might say, ”Okay, great, good for AER members in this summer.” They passed a resolution. I guess they care about it and right and so now it becomes a collective community push. It’s the community’s responsibility, all of us together to make sure that the recommendations, the demands of those resolutions are adhered to. That’s going to involve future work with RSA and others to make those policies a reality.
Jonathan: Is the nature of rehabilitation changing? When I talk with people about what makes the NFB training center so successful, notwithstanding the things that we’ve been talking about, people have said it’s really about the difference between teaching someone to fish versus giving them a fish. I just wonder whether thinking is evolving in this regard that some of the techniques that were popularised by Kenneth Jernigan and have become core to those training centers have now entered the mainstream rehab profession.
Mark: Yes, I think that’s probably fair. I remember in my first tour of duty at AER 20 years ago, the hot topics were things like providing orientation, mobility services under blindfold, no matter whether you want it or not and whether the instructor or the trainee wants it or not, and should that be a blanket requirement? That set the there are lots, of course, consumers debating that issue hotly for sure in the AER context that was about Frankly, who should be making those decisions about when it’s appropriate to provide services in this or that fashion, whatever they happen to be.
I think it is, and Lord knows they did, debatable proposition about whether it makes sense, use of any remaining vision away for purposes of being able to properly learn how to travel independently. People will disagree about that and indeed, people have tried to muster peer-reviewed research evidence to try to support various points of view on the subject, and good for them. Ultimately the AER question was, ”Whatever that evidence shows in this or that specific context with this particular O&M instructor and this particular client who gets to make that decision?” Ultimately the debate came down to, “Look, if you’re an employee, particularly an employee, even a contractor, whatever, your staff in some fashion of public agency X, and the director says, “Look on my watch in this agency you shall do it the way I tell you to do it.” That ends up being a challenge for the orientation mobility profession that does have a code of ethics that is reflective of an array of points of view that have been debated quite significantly, and the challenge then becomes who gets to call the shots.
Now, if I were a CEO I’d say, “Hey, you see this sign on my door, here’s my business card. See the title under my name, I’m Chief Executive Officer.” That means I’m the boss, so I set the policy or my board or the powers that be here’s set that policy. If you’re going to come work for me as an orientation mobility instructor, you gosh darn better well know as you come in that door for the first time, you answer to me, you answer to how we do things around here.”
That is not a unique dynamic to O&M, to the blindness field it’s classic. If you’ve got a profession, a designated known independently certified profession that adheres to certain well-established cannons and codes of ethics, and that individual professional who has those qualifications, exercising their professional judgment. Says in this particular instance, “Mark really would not benefit or really could benefit from receiving O&M in this way.” Who better to make that decision than that immediate professional?
The debate obviously on the other side is everything I’ve just said, who better, their boss, the agency, the policy of the agen– that kind of stuff. I don’t know if this is what you’re getting at, Jonathan with your question, but I would say those debates about what is the future of rehab, or how have services in the voc rehab context, how have they changed, evolved. Having been away from an actual recipient of such services in a very long time, and as I told you keeping my head way up pie in the sky 35,000 foot.
There’s probably others who can give you a more thorough review of the state of play of what’s actually being delivered at the ground level in the voc rehab context. I would say in those larger questions, all of those dynamics that I was just describing about who gets to call the shots, do we honour professionals for the professional judgment that they have earned, cultivated and have had recognized through certification or some other credential. Do we recognize them, honour them or not? I think that’s always going to be attention.
Jonathan: Yes, because I suppose the professional judgments still does not necessarily ensure that there are positive expectations of blind people. One of the problems that we have is that the blindness techniques, the blind way of doing things is so often considered by even some professionals and society at large as the inferior way. There’s the classic, this child can read print but this child has to read Braille. I have personally seen in my own field people taking five minutes to read a short email with their face very close to the screen.
They could have read that same email in 20 or 30 seconds by using text to speech, and yet there’s a mindset, there’s a pride thing that says, “I am doing this the sighted way and that is the non-blind proper way. Therefore, it’s the superior way.” Unless you instil the professionals and the decision makers with that mindset that actually these alternative techniques are respectable, they’re viable, they’ll allow you to be more productive and efficient in your life, they’ll increase your employability. You’ll be fully aware of the mind-blowing statistics about the unemployment rate. When you look at Braille readers compared to the non-Braille reading population it’s astounding, so you’ve got to build those foundations, right?
Mark: I think there’s no question that in any profession there becomes an orthodoxy that is imposed, sometimes it’s top-down, sometimes it’s whoever the loudest voices are, sometimes it’s tradition, we’ve always done it this way. Sure, in any profession there is an orthodoxy– and maybe orthodoxy is a singularly inappropriate word because maybe it’s not right thinking or straight thinking to use orthodox in the technical right term. Because in fact, maybe that settled point of view is exactly founded on misconceptions you’re talking about.
Let’s also not cheat ourselves that the reverse can also be true, which is somebody can come along with what they claim to be look, “Hey, we do some things differently here and we’re not going to just take the received wisdom. We’re going to do something new.” Really what that thing is that’s trying to be passed off of something new is just a way to further narrow opportunities. I can tell you from my own personal experience, I had a heck of a lot more vision which isn’t saying much, but a heck of a lot more vision than I have now, which is basically nothing when I was a little kid.
I was one of those kids who thanks to his fierce tigress mama got Braille instruction when professionals in the mid-1970s were saying, “Well, you don’t need to go down that road now. Come on, let’s focus on making the most of his usable vision” Yet it makes sense that I would receive Braille instruction. I think it makes sense for any kiddo who’s got something up with their eyeballs to receive Braille instruction. You want to give a child every conceivable opportunity to succeed for sure. There are also people who in fact do have usable vision for whom when you do an assessment of their so-called learning media needs.
You find out that this child would actually succeed tremendously if they have an array of services both Braille and other things, and to celebrate that and to honour the choice of that kiddo or their family, et cetera. Again, not to shut out Braille, but to make sure that the kid has every tool at hand to work well. This ends up then getting translated in very concrete ways where there are different techniques for doing a so-called learning media assessment. In fact, there are people who don’t even agree on the name of that thing because they would say, what we want is a reading assessment that’s different from what most in the blindness field would provide as a learning media assessment.
When you break down exactly what that other evaluation tool or process does, what you find out is that it almost stacks the deck against being able to assess whether this particular child has usable vision that that child could benefit from maximizing in some fashion. The funny thing about any profession, not just blind any profession, you can get to a point where an aspiration to develop and based a profession on evidence, nevertheless, is all being done by humans who have their own biases and come to the table with an agenda right or wrong.
The only thing that you can really do is let those professions and those points of view and that evidence speak for itself, debate it, and we as a community will draw certain conclusions from it. Will we always get it right? No. Follow the human beings making these decisions. Don’t ever look for perfection, but for sure there are opportunities for debating things and coming together around a consensus. I think our field has in this particular area, for sure.
Jonathan: Transcripts of Mosen at Large are brought to you by Pneuma Solutions, a global leader in accessible cloud technologies, on the web at pneumasolutions.com. That’s P-N-E-U-M-A solutions.com. I want to change hack and I wouldn’t ask this question except that you raised this issue with me when we were setting up.
Mark: It’s my fault.
Jonathan: Yes. I applaud your bravery in doing this. You’ve mentioned that you’ve struggled– and you made a brief reference to this, in fact just a few minutes ago– that you’ve struggled with depression in your life, and that you don’t feel that depression among blind people is talked about enough. It’s interesting that you raised this because over my summer I read a very interesting book called The Power of the Downstate. It talks in there about how minorities face all sorts of health risks because of the discrimination they suffer, the challenges they face and the way that they internalize that inevitably. Could you talk a bit if you feel comfortable about that intersectionality of depression and blindness?
Mark: Yes, I will. The only thing I can ask people who are listening is to trust me when I say the following thing. In my case, we have a family history of some depression– really on both sides of our family. In my particular instance, I know with a certain significant degree of confidence having had professionals work with me, that this is much more of a situational thing with me than it might be for others. On some level depression is always– there’s chemical in your body, how your brain works, et cetera, how your physiology is responding to things. There’s always those dynamics there.
In my case, I think I’ve always struggled with what I always casually called the blues. My depression, particularly which really kicked in the fall of 2019, was very much situational and triggered by some decisions that I had made. Also, decisions that were made and dynamics that were going on at the American Foundation for the Blind. I worked there for what, two-thirds of my professional life. I love it, I’ll always love it. I love the memories I have of the things we got done there, the personal and professional connections made there. I still love AFB for what I believe in my heart AFB can become.
Jonathan: We’ve got an international audience here, obviously. I wonder if you’re able to just talk a bit about what’s happened at AFB, and why this leadership change is going on.
Mark: The dispassionate part of that is at any time after, and in this case, it was a gentleman by the name of Carl Augusto, who is a dear friend. Clearly, someone who– we like to use these funny phrases in the blindness system for some reason, our leaders and our legends. For sure, this guy is a leader and a legend, if there ever was one. He had been the CEO for 25 years. I think anytime you have senior leadership of that renowned serving for as long as someone like that does, and then you make a change it’s a struggle.
AFB then hired new senior leadership who came in with, I think a number of– what’s a good adjective here? Interesting ideas. One in particular that I certainly thought at the time would be something to think about which is, okay, since no one seems to be making progress on employment for blind and visually impaired folk, at least not here in the US, maybe that should be the first, second and third priority in a lot of ways that we tackle at AFB.
Hey, you get nothing from me about amens, but amens for me on that. I think the approach then was to say, well, and maybe the way to do that is for the American Foundation for the Blind to play a major coordination role within the so-called AbilityOne Program. What we used to just refer to as our workshop program in the states. I think there are a lot of people for whom that tack raised eyebrows in principle and then the way it was handled, frankly, where there wasn’t a whole lot of transparency about what AFB was doing really put some people’s teeth on edge for sure.
Then whatever, over the course of time that leadership makes certain changes, makes certain choices about who they want to have reporting to them at senior leadership levels. With any change like that, especially when you have a sweet little– yes, I can be sweet when I put my mind to it– sweet sensitive soul who has always worked with people who have ended up being super close friends. Then now all of a sudden you find yourself reporting to a whole new crew of folk who don’t necessarily have much in common with you or you with them in an environment that is pointing in a totally different direction from where you thought things were going. Yes, that’s a struggle.
Jonathan: Is this a danger of being a part of the system that obviously you’ve got to be on the inside to make a difference, but you can get to a point where your values feel compromised and then it’s probably time to go.
Mark: Yes, and I also want to be super careful to say values. I’m not so sure that values in this AFB context were compromised. I think it’s a deeply personal thing for me just in terms of a work environment. I think others have experienced that. There’s been a ton of turnover at AFB, and not just in my little set of cubicles where I worked, but in other contexts as well over there. A lot of that has to do with managerial style. There’s a lot of those kinds of things which get into stuff and stuff that is just not worth talking about publicly in that sense.
To your point, I’ve been blind all my life, obviously, as you can tell. I care about it very, very much. Got a lot of friends all over the place in various sectors, sectors of which don’t necessarily, or have historically not necessarily gotten along. Gosh, I don’t know how many times I’ve said to people who are close colleagues you spend a day, a week, a month on Capitol Hill together hammering away at something.
You’re sitting across the table from a bunch of technology companies, and this was true 10 to 12 years ago when we were trying to move the Communications and Video Accessibility Act through, the CVAA. You’re sitting there and a lot of those tech companies were great to work with for sure and yet there were a lot that were– I don’t think, is this a family show? I don’t know that I can use words that I would want to use with respect to some of these people-
Jonathan: I get it.
Mark: -we are one company– that literally went to the press and said, “Democrats are trying to regulate your iPhone.” They were trying to stir up partisan controversy where there wasn’t one– none– since all of us in blindness had been working hand in glove with both Republican and Democratic members and staff who were getting along quite well. Frankly, we would not have accomplished the CVAA at all had we gone down any a partisan rabbit hole. This one group in particular tried to stir that pot because that’s whatever, they play those kinds of dirty tricks.
You sit across the table from a group like that and then you go home and you want to relax, and then your consumer electronics don’t work and you’re always blind. You’re always on. I am not a lady and I don’t think you have to be a lady to care about women’s issues. I think I do. I cannot imagine what it must be like for a professional working in the women’s health arena doing that work all the time, 9:00 to 5:00 as it were. Then you go home and you’re still a woman. I guess I can understand that dynamic in a sense.
Those of us who are blind are always blind. Yes, it’s really tough. It also means, of course, the flip side is that when you do this work it ain’t a job. It’s a cause and it’s a passion, and if you are fool hard enough, whatever, to stick it out and put up with that sometimes difficult dynamic, it’s a super rewarding thing. If you’ve got an organization that you devoted yourself to for a good long while, and they go off in a different direction and say, “I’m sure you’ve done some good things, but thanks so much, but we’re going over here.” That can be really tough.
In my case, I then voluntarily stepped away from AFB and said, “You don’t want me, well, the hell with you.” It was very much a cut-off your nose despite your face thing. I was mad and ended up finding myself in a situation where a new employer who had hired me– I don’t want to say it wasn’t under false pretences, but they believed that funding was going to be coming in to support a policy function that I was playing there. Dog bites man, money didn’t materialize. I was already grieving what had happened and gosh, I thought people liked me doing this work, and I guess you guys weren’t into me.
Then I ran away and now here I have, I found myself in this situation. Now look at you now you’ve turned your back, Mark, on things you care about because you were all pissy about it. Now look at you. There are a lot of other personal things I won’t bore you with, but those are some pretty massive triggers. Then you find yourself where it gets really bad. Really, really, bad. I’ve talked about this on other podcasts and things other shows. Where aside from a physical sensation of being burnt alive, I can’t imagine how the experience of hell would be anything different from that feeling where you are down in that pit.
The worst part about it is you think, I’m never getting out of here, and even death is not going to– you want to get metaphysical about it. Death isn’t even going to release you from this. You will always feel this way, and the worst part is you deserve it. You deserve to feel this. It’s terrible. Thank God with amazing family support, and pastoral and professional help, and good friends who are good at administering tough love. For sure a call out of the clear blue from AER saying, “How’d you like to come help us out of the mess that we find ourselves in.”
People who know me really well know that there’s nothing like putting Mark into a situation where you got to fend for yourself and get into some good scrapes, and a few good knockdown, drag-out fights with folk, and get to relight that pilot light. I think the timing could not have worked out better for me. Now is the part where I get to say, and yes, it worked out, I think, better for yours truly, and for AER in that they– now, we at AER have a new exec, I’ve mentioned his name before, Lee Sonnenberg who’s off to a good start.
He’s our new permanent exec, and yours truly was hired by Todd Reeves, who’s the President and Executive Director of the Overbook School for the Blind in Philadelphia to head their international program. It’s a thrill to take whatever I may have in terms of knowledge or the connections, and bring them to bear to help assist– to be supportive of people who are doing amazing work on the ground, particularly in Southeast Asia to provide educational technology and related services to a part of the world that, oh, my gosh, we think we have it bad. We ain’t seen nothing.
Jonathan: It can all be pretty precarious because for a while you are humming along, things seem great, you’ve got a steady income, a job you love. Then I think when this thing happens it can be a little more difficult for a blind person to recover and bounce back from that for the various reasons that you’ve talked about. Then I suppose the thing is holding on because when your brain kicks into that depression state you genuinely believe you’re worthless, that there’s no way of fixing this. You don’t have the capacity at that point in time to see a way out. It’s a very dangerous situation and quite difficult to extricate yourself from. It sounds like you had a really good combination there of great support and a little bit of luck, which we all need.
Mark: Absolutely, right. When you’re in a spot where you think, nobody wants you, everybody hates you. Then in the span of not too long of a period of time, you find out people are seeking you out. I remember overhearing my dear sweet mama with whom I was living for a number of months once this depression just really– it just hit and it was a good thing. I don’t want to overplay this either. I’d never got to a point, thank God where I was thinking about harming myself. I don’t think there was any risk of that, but I for sure needed others to be around. I’ve always lived by my– for the last 15, 16, 17 years, that’s a whole other story where I’ve been living by myself and on my own. To be around other people was great and my mother was very supportive, which is nice. She’s also a good deliverer of tough love too. I remember overhearing her say something to one of her little old Lutheran lady friends on the phone, hey– this was in spring of 2020 when the world is shutting down and everyone is losing their jobs. She says, “Seems like everybody else is losing their job with this COVID thing, and my son they just call him up and offer him a job.” It’s true, that’s exactly what happened to me.
Then along the way, while I was at AER, our friends in the private agency’s world, an organization called Vision Serve Alliance, they wanted to kick start their public policy system change effort that another friend and former boss at AFB, Paul Schrader, helped to initiate with them. He went on to, what greener pastures? Am I allowed to say that? At the American Printing House for the blind, and good for him. The private agency folk said, “Mark, how would you like to help us move that even forward, take it to the next level?” That was great.
There you go, overnight, going from my feeling like, hey, we’re done with you, you’re a has-been and we’ve moved on. To the private agencies and the professionals in the field saying, maybe it’s not a forever relationship, but we need you and we need your help. There’s nothing like being needed to help. The last thing I want to say about that, Jonathan, at least for now– you can ask me other questions if you want, it’s fine. To your point about how difficult it is for those of us who are blind.
That’s true when I left AFB and got a job at an amazing group called National Disability Institute who does amazing things, it’s a cross-disability think tank among many other things. Focusing on the economic self-sufficiency and independence of all people with disabilities I was flattered to get the job. I would have loved to, I think, continue on helping guide their policy work, but that did not turn out. This is an organization for as wonderful as they are, I think I was their first full-time visually impaired or blind staff person.
Again, from an environment where, no AFB and none of the blindness organizations from what I can tell, do it picture perfectly. To go from an environment that is arguably tailor-made for blind and visually impaired people into an organization who has no clue what accessible PDFs are and how to make that happen. A culture where, gosh, we’re sitting around the table one day there, in one of these all-staff meetings and a bonding thing. The boss says, “All right, now, I want– perhaps every one of you, why don’t you get a piece of paper and draw a picture that is especially meaningful for you?” One of these bonding exercises.
We did other things but the point I’m making is, this is not an environment where people were thinking much about the full inclusion of their blind staff. When you’ve got an environment like that where you feel literally like the fish out of water, that does not help or improve one’s mood if one is really struggling either. You are correct, sir, that I think it was amazing to go through an experience where, okay, I want to leave AFB now because of things I think they want to move on, and it’s probably time for me to move on. Then even if you are going off in a huff, you find a new job and you go through that effort and it’s exciting, oh, they hired me, great.
Then you get there only to find out that an organization that in theory should be super and disability sensitive just has no track record or experience doing it. For sure that burdens your ability to succeed there. I would be a liar if I said that also was not a dynamic in this. At one point toward the end there in September of 2019, it was a week’s worth of trying to put together PowerPoint presentations. Perhaps Jonathan, if I had listened to you or to Brian Hartgen or some of these other people more than I have or learnt than disciplined to learn those skills, that would help. Even if I had, it’s an environment that moves at a different pace with respect to the preparation of visual materials.
If you’re already feeling like a worm and you’re not particularly capable of this and you’re thinking I’m going to fail, I’m going to fall flat on my face in front of these people, that’s super tough. I don’t want to say that I’m glad that I’ve had those experiences. I will say, it’s been useful to now have lived through them because some of us who live in our heads too much and live up in the stratosphere and maybe are a little academic or policy-oriented. Sometimes you can get a little disconnected from the real experience of other people who are facing a lot more stuff than we know, even partially about.
Jonathan: I’m thinking it’s great that you’ve come out the other side and that you are where you are and it’s a great story to be able to tell, at least to a great extent in the past tense. I’m also thinking you are very articulate. You’ve got a lot of skills. You know people, you’re well connected. I wonder what you might say to those blind people who are listening to this, who don’t have a job at the moment, who genuinely try, who’ve got an organised day.
Who might spend 3 hours when they’re at their best in the morning looking for and then applying for job, after job, after job? They feel like the universe is just treating them like crap, that they’ve got so much to give, they want to offer something and nobody’s giving them a chance because of inaccurate expectations of blind people. It grinds you down and inevitably it will send many people into a depressive state and then it becomes a vicious cycle.
Mark: Sure. The first thing that comes to mind is networking. Now, before people tune it out and say thank you for yet one more platitude, let me tell you what I mean by that. Just looking at my little past or whatever on a piece of paper or looking at a resume. Okay, so went to law school. You got that credential. Yes, check. I will accept because I hope it’s true, your compliments, so thank you. I’ll let others judge if you are right or if I’m all those things that you just said I am. Whatever that is on paper, yes, there’s some stuff there, but you can have all the credentials in the world. It’s not going to mean a thing unless you have that network. In my case, I am not a natural networker.
I’m one of these big-mouth introverts. As much of a talker as I am, I’d rather write than talk, believe it or not, and I would rather be by myself than in a group. This is going to sound super arrogant, but hey, I’ve been honest with you on this show. If I’m going to be in a group, I want to be at the podium. I am not one who naturally gravitates to be in the group, in the stands with everybody else cheering on the team. I want to be on the field. I should be careful about using sports and now I’ve because I’m such a nerd. I always joke about in American sports, football, or baseball, which one is the game that’s played with the sphere or the oval? I don’t necessarily know.
I don’t need to be the quarterback. I don’t need to be the star of the team. I sure do need that feeling of, wow. In that game, those couple of plays that Mark made, holy mackerel. It’s amazing. We couldn’t have done it without him. That is a deep personal need of mine. I don’t have to be the centre of attention, but for sure I need to be part of that team. Now, why did I tell you that? Because in my case, I didn’t have this elaborate gazillions of people work my network thing. When I got out of law school, it was a year and a half looking for work, and that was a long year and a half. I will use the D word and lowercase d, depression for that period of time.
There is nothing that makes you feel lower than low when you’re getting to the point where you’re cold-calling offices. You’re wandering in with your pretty little resume and the receptionist says, oh, let me see if partner X might be able to see you now. Which talk about a poor strategy of just wandering in. You do what you think you need to do at a certain point and a level of desperation things. Then you hear receptionist go back and whisper to partner X a lot of words you can barely hear, but the few phrases you hear are he’s blind. You hear that, and then you hear the deeper– and this is 20 years ago, 30 years ago, actually, 30 years ago.
The deep male whisper voice that says something like, you know, just tell him I’m not here. Take the resume. She comes back and says, “I’m sorry, he’s out. I thought he would–” they out loud lie to you. You hear that kind of stuff you just leave feeling like, I’m not going anywhere. I might as well go back home and live with my parents or whatever. Whatever you think you need to do that’s tough. In my case, I had a very small network. I’ve already mentioned Scott’s name. There are a few others who I got to meet, but it’s tapping what it is you have. Network is important, but it is those personal connections that are absolutely key.
If you don’t have them now, find a way to start to develop them. Even if you are like me, a pretty serious introvert type, whether it be an opportunity for, let’s say, in a congregational setting, where you’re actually getting to– being a good Lutheran boy I’m hearing my conscience say, you are not a very good Lutheran boy, I hear my conscience saying, no, you shouldn’t go to church so you can find a job. I would say that there are some intentional choices that have to be made in spite of perhaps one’s nature. If you don’t have that immediate core of two or three people who also themselves may know folks, then intentionally build those networking opportunities into your life.
Again, don’t be afraid of, wait a minute, I’m not a social person, so if I do that or join the local club or the, whatever, go to the library to meet new people. It frankly does not require dozens or hundreds of contacts necessarily in order for you to see opportunities open. I’m afraid Jonathan that’s all I got for you on that. There’s no magical formula out there, but for sure I can tell you it worked for me. I’m a testament to how even tapping into the limited context that you may have cultivated can lead to something. Oh, maybe I should say this too. Not every contact is equal.
In my case I was blessed, fate, whatever, take your pick that you’re most comfortable with in your mind, that the limited contacts and network that I had were pretty significant amazing people. The last thing I’ll say about this is, how did I get to meet the gentleman who’s my best friend, but who also then helped to get me connected up into this crazy wild blindness policy world. Because we had a mutual acquaintance who was a graduate of my college many years before me who was part of a scholarship committee where I got a little– this very modest scholarship to attend law school as a result of that.
This lady happens to be a well-known person here in DC and well, I think in the states generally for a whole host of reasons. She was the first person I called when I moved to Washington DC in June of 90. I didn’t know a soul up here, not one person. I was in love with DC, wanted to move to this area for all kinds of reasons. Anyway, I called her out of the clear blue, “Hey, I’m here.” I felt like this long-lost sheep. This is the only name and number I had. She– the person you really ought to meet is this gentleman, and that was the beginning of other things.
The moral of that story, you never know who is going to be in a position to connect you up with the right people. In this particular instance now we’ve come full circle Jonathan to your notion, what about blind people doing it for ourselves? This lady I’m talking about herself is visually impaired and I think don’t ever discount other blind people including other blind people who are going through struggles as being part of that network you ought to reach out to.
Jonathan: It’s also incumbent upon those of us who are in those positions of influence to always make some time, isn’t it, for those who are coming through and may need a helping hand.
Mark: To whom much is given much is required.
Jonathan: It’s good to see. I like to think anyway that the stigma about seeking assistance from mental health professionals is declining. Because if you break your leg no one would say, well, don’t go to the doctor, because who knows what people will think of you. Hopefully, if your mind is a little broken, you can seek some assistance as well. I imagine that there are challenges there where mental health professionals who perhaps aren’t particularly disability confident take the blindness out of context. The blindness may be a contributing factor to some extent, but often I hear stories of mental health professionals who become fixated on the blindness and don’t look at the individual they’re with in a holistic sense.
Mark: Oh, there’s no question about that. We’ve been talking for a good while, and I don’t want to frankly probably bore people with a bunch of examples of mine. Even just in the experience I had which really was intensely speaking over about a six-month period, is that right, six month? Yes. About that first working with a straight-up psychiatrist involving medication which frankly was not a good fit for me. When you’ve got a situation where your doctor is prescribing medication, you say to them immediately I’m experiencing all these other side effects which are just exacerbating everything– bad news.
There’s some medications that are so-called ototoxic medications, and for sure the one that I was put on for anxiety and depression, I had no idea that there were such that you could pop a pill and it could screw with your hearing. I guess I should have known that, but what do I know? I’m still dealing with tinnitus and other things as a result of what happened there, because I think there can be some perhaps mild, relatively speaking, but damage that’s there. When you have a situation where you’re a doctor– you report all these things to them and their response is, “Oh, these are just excuses, or patients will sometimes do this. Maybe what we need to do is up the dosage.”
You’re a basket case, so you’re not really in a position to necessarily advocate for yourself which is why you need people around you who can help see that dynamic and respond to it. I’m grateful to have had that option, but along the way working with this particular doctor who I dispensed with as early as I frankly had enough wherewithal to help move along and move into more of a talk therapy and professional counselling context. That was not so much focused on medication, but much more in talking to me, in getting me to talk about and voice and grieve all of that other stuff we’ve already talked about.
Along the way, crazy things are said to you, and assumptions are made about your blindness. Sometimes it’s not that you can even point to a specific comment or something, it’s the overall approach with you. You show up to an appointment with you and a family member, and of course they’re only talking to the family member and not you. Here you are a 50-year-old man standing there, and they’re talking about you as though you are not there. Yes, there’s no question that a lot of that is attributable to backward attitudes about disability which is why a number of our groups AER has done this, American Council of the Blind.
ACB has got a task force initiative underway to get together and think about how can we collectively approach mental health professionals in that community to identify what are the most critical changes or attitudes or even professional standards that ought to be addressed. How we can do that together, so AER is contributing to that, ACB is, I think other groups are to. The mental health professional community for sure needs a lot of education where we are concerned, thus, so many of them do.
Jonathan: We don’t even know what people are going through, do we? It’s a reminder to try and be kind to one another.
Mark: Yes. Let me say about that. Again, I would never say I don’t think I would, and I’m glad I went through that. Those were useful experiences. It literally just a hellish time. If I spend time really reminding myself about the way I felt at various times, it can be terrifying. There’s no question about that. I will say that it is useful now at this point to see how many people have responded when I’ve put myself out there. Was it May of 2021 I did a thing– email out to– well, pretty much all of our contacts, but especially the AER world? Hey, May is Mental Health Awareness Month and we should all be doing more about this. By the way, let you know I’ve had some personal experience with this.
Then you do that and people who you have never met reach out to you. I am not going to use his name for his own personal– it’s his business. If I mentioned it, everyone who listens to you, and Jonathan, you would do this too, you would say, “My gosh, what a known-named figure in blindness who sent me this.” If I printed it out it would’ve been a four-page letter. This person trusting me with this very personal commentary about, first of all, Mark, good for you that you did this. That’s always nice to hear, good to have encouragement. Then the rest of this letter is talking about their personal experiences, the fears they’ve had about it. It’s just remarkable.
I’m reading this thinking, I have known of this personality who was an iconic figure in our community. Who number one, they’re an iconic figure, but I’m not a close personal friend with this individual, and we’re not spending Thanksgiving dinners together. [chuckles] This person is really trusting me with this commentary about their experience. Many people did that, and it was just remarkable to see. To your point that we never really know what other people are going through, and in my case, a lot of people said to me at the time when I said this, “We would never have known, you’re always a guy that’s trying to crack jokes, maybe crack them too often.
You’re always up there talking and being all animated, and this is the last thing we would’ve thought.” Yet then still a few others, a small number of people, but who have said, “We noticed a couple things going on because we’ve had our own experiences along this line too. Just know that you’re not alone.” Just kind of stuff it’s spun gold to get that feedback and so it’s a lesson I think to all of us to say, “You can’t really draw a lot of invariable conclusions based on what we think people are really like.” Maybe that gives us or ought to give us a bit more compassion.
Jonathan: I appreciate this discussion we’ve had. We’ve got into some good meaty philosophical topics which will no doubt get people talking. I also appreciate your willingness to be so vulnerable. The time has flown by. When do you become president of AER?
Mark: At the conclusion of the business meeting that happens at the next Biennial International Conference of AER which is going to be held somewhere. [laughs] I say sheepishly. I think we’re hoping for perhaps somewhere in maybe in the south, southeast maybe, but we haven’t settled on an official [unintelligible 02:09:36] which we better get off the dime here pretty soon. Because it’s going to be in July of 2024 unless of course, we don’t get cracking on settling on those dates.
Jonathan: I look forward to keeping in touch. I hope that we’ve stimulated some thought-provoking discussion. Thank you very much for your time. I really appreciate it.
Mark: I appreciate you having me be part of this. It’s very fun, so thanks. Thank you very much, sir.
Jonathan: I’d love to hear from you. If you have any comments, you want to contribute to the show, drop me an email written down or with an audio attachment to firstname.lastname@example.org. If you’d rather call in, use the listener line number in the United States, 864-606-6736.
Mosen At Large Podcast.
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