Recently I was interviewed by Stephen Jolley, for his show Talking Vision. aired on radio reading services and community radio stations across Australia.
We talked about tech, broadcasting and a bunch of subjects, including my background. In the interview, I mentioned that the cause of my blindness was an x-linked condition, Norrie Disease, which means that my daughters have a 50% chance of having a blind son. I mentioned in passing how cool I thought it would be to have blind grandchildren. This prompted the following comment from a reader of the blog, and obviously a listener to the interview. Rather than bury the conversation in the comments, I thought it warranted its own article. It’s an important question, because I know of blind parents of blind children who’ve been stopped in the street by strangers, criticising them for bringing a blind child into the world, like it is somehow their business.
Here’s the comment from Jacques.
Sorry Jonathan, just have to get this off my chest
First and foremost, I have followed you for a good number of years in the AT environment and have always thought your contributions to be valuable. It follows therefore that this is no personal attack, merely an observation which leaves me a tad uncomfortable.
You mention in the interview that your syndrome which potentially could have been passed on to your daughters may mean that their children could end up with the same syndrome you have, i.e. being blind with hearing loss over time. You then say that you think it’s pretty cool and that you’re looking forward to having blind grandchildren.
Have you thought about this statement prior to making it public?
I am aware of all your latest proclaims of being comfortable in your skin, the best time ever to be blind, etc. I, too, am comfortable in my skin as a totally blind person and I’m also very excited about development in technology and how it can potentially improve my level of independence, and in fact, does improve it on a daily basis.
But really, can one honestly get excited about bringing a blind kid into this world?
Are you, or your daughters really comfortable with deciding for a potential child that he or she will be fine as a blind person with a hearing impairment in this world?
Do you think it’s fair for you to decide for them in advance that they will be as comfortable with their disability as you claim to be?
Call this overreaction if you like, but I feel truly concerned about your statement. In my mind I would’ve expected something like this from someone who really is out of touch with the world outside his or her blind circle of activity.
If I understand your statement correctly it means that if you were given a choice you would’ve been happy choosing the life of a blind person with a hearing loss over having normal sight and hearing?
If I in any way misunderstood the referred to statement I’ll be happy to be corrected.
My response to this comment is mine alone, I don’t speak for anyone else.
Genetic counselling can be useful when you have a history of disability in your family and you’re looking to start a family of your own. Getting top-quality genetic counselling, not loaded with the prejudice that is sadly still all too common in the medical profession, can be a challenge. When my kids’ mother, Amanda, and I were contemplating having a family, we went along to a meeting where a medical professional kept describing the “risk” of having a blind child. I’ll never forget how Amanda, who is sighted, got up at that meeting and took this woman to task for her choice of language. Amanda pointed out that use of the word “risk” was a term implying somehow that blindness was a bad thing, like an illness or fatal disease. Amanda urged her to use the word “chance”, which means the same thing without the negative connotations. I was so proud of her.
When we had children, we were fully aware of the prospects for the future, and the consequences of our decision.
When our first child was born, many people tiptoed around the question of whether she was blind or not, clearly dying to know. Amanda and I would get questions like, “is she…you know…like Jonathan?” Many of the questioners couldn’t even bring themselves to mention the dreaded B word. Amanda and I settled on a response, which from then on, we both used. “No, actually she can see, but we love her just the same”.
I first read an article by Kenneth Jernigan, entitled Blindness: Handicap or Characteristic, when I was in my late teens. If you’re interested in this subject, then please give it a read if you’ve not read it before. This one article put my blindness into perspective for me, and it’s a philosophy I’ve followed since.
Can blindness be a pain in the butt sometimes? Oh my word yes. Are there things blindness prevents me from doing that would make life easier? Sure, for now. The biggest one I can think of is driving, and we’re even making inroads there. If I am fortunate enough to have blind grandchildren, I feel sure they’ll be driving on their own in their lifetimes.
Sometimes I drop something and can’t see where I’ve put it, and I know that if I could see, I’d spot it instantly. But usually, since I’ve had good training in blindness techniques, I can find most things with a little extra time. Perhaps that’s compensated for by how much more quickly I can resolve a tech issue than many sighted people I know. It’s all swings and roundabouts.
Sometimes, I might need sighted assistance to complete a task, but we’re all interdependent in some way or other. This weekend, my daughter is helping us complete a mountain of paperwork. Of course if I were sighted, I could do it myself. But I know that when her computer breaks, I’m the person who’ll fix it. She’ll rely on me to put a roof over her head while she’s studying at university. Families help each other out in all kinds of ways, even when there’s no blindness in the mix.
My partner Bonnie is shorter than I am, and believe me, that really is saying something! Sometimes I can get something down off a shelf without standing on a stool, where she can’t. I’m stronger than she is, so sometimes I can twist the top of a pesky container where she can’t. Being blind is a nuisance at times, yes. And so is being short, or for that matter very tall, or tech-challenged, or left-handed. We all have strengths and weaknesses, skills and deficits.
Of course I miss the hearing I had when I was younger, but I’m still doing my broadcasting, have travelled extensively internationally, and enjoyed a fulfilling life. My so-called “disability” hasn’t stopped me from doing a single thing I’ve wanted to do.
Does that mean that I would choose blindness over sight, or that I would prefer to have blind children instead of sighted ones? At this point in my life, I would reject sight were I offered it. I’m nearly 45 years old. I have no desire to be confronted with a mass of visual data my brain wouldn’t know how to interpret. I’d have to go into rehab for a long time to make sense of it all, and frankly, it holds no interest.
If we’re talking about a brand new life though, or a much younger one, then that to me is a different question. The world is geared towards the sighted. With sight, the world’s a more accessible place. Many people who have sight are so sight-dependent that there is significant and undeniable discrimination out there. But let’s put that into some perspective. There is discrimination against a wide range of other characteristics too, from race, to gender, to sexual orientation. There is no one quite like you. You’re an original. People will find something different about you to criticise, no matter what hand life deals you.
It is likely that at some point, gene therapy will mean that it will be possible to isolate and repair the Norrie gene. I wouldn’t want to stand in the way of that process in any way at all, nor would it be my right to anyway. A decision like this is a highly personal one, and ultimately the exclusive prerogative of the woman who would carry the child.
So the real question is whether it would be better to be born blind than not be born at all. Like everyone, I’ve had successes and made mistakes, had high-points and low-points in my life, but life sure beats the alternative.
In my view, the key to functioning well as a blind person is training, opportunity, and mindset. Amanda is now a teacher of blind kids. My kids are being exposed on a daily basis to stories about blind kids succeeding, being prepared for a fulfilling life after school. I’m continuing to be a provider for my kids and have provided for them financially all their lives, so they’ve never wanted for any essentials. We’ve shared many amazing experiences together. Local outings, holidays away, trips to Disneyland, just hanging out and having a laugh.
Bonnie is a capable, well-presented blind woman with a strong work-ethic, a wonderful sense of humour, great fashion sense, and plenty of warmth and generosity. So any blind grandchildren I do have will be coming into an environment where those taking care of them know the challenges, and know the immense possibilities, but where blindness is simply no big deal at all. I remember a wonderful occasion where I was reading a story to my daughter, where there was a picture in the book of a daddy reading a little boy a story. Her question: “why is that daddy not reading Braille?” To her, dads read Braille, mums read print, that was her normality.
Why would I be excited specifically about having blind grandkids? Oh, many many wonderful reasons. I’d love to see them with their first cane, exploring their surroundings long before they attend school for the first time. I’d look forward to checking their technique, making sure they’re learning about safe navigation and exploration.
Imagine the thrill as we go through a Braille book together, and they pick up more and more of their letters. When they see Bonnie and me reading fluently to them from Braille, they’ll know what’s possible if they persevere.
When they get older, I look forward to sharing my love of radio dramas and other things audio, since there are no visuals to distract them.
Of course, there’s all the technology, instilling an appreciation of its use and benefits, and fostering the ability to explore and problem solve.
There’s being able to teach them how to handle set-backs and discrimination constructively, being a firm but polite advocate for their needs and the needs of blind people like them.
Finally, most important of all, there’s just the affinity of having a family member who is part of the same minority as you. That’s a pretty special bond.
But when the time comes, and just in case any of my kids are reading this, let me be very very clear that that time is quite a long time off yet, it will be wonderful to be a grandfather, whether the children are blind or not. Sure it will be cool to have blind grandchildren, but it will be just as cool to have sighted ones. How nice it will be to spoil the kid rotten and then give it back to its parents who can deal with the consequences. I have four wonderful, talented, smart, funny, intelligent, compassionate children who are sighted, and they’re the best thing that ever happened to me. Yes, there would be some very special things about having blind grandchildren and it does excite me. Blind is fine in my book. With all the nurturing and positive role-modelling they’ll get, they’ll do just fine. But blind or sighted, I’ll love them just the same.