Why I’m Excited about having Blind Grandchildren

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.

14 Comments

  1. Tammie Hansen

    Jonathan, I completely agree. It’s all in how you look at things. In reference to people confronting parents of blind children on the street, that reminds me of an experience my Mother had when I was a baby. She was walking down the street, and her Uncle was walking the same way. As soon as he saw her, he hurriedly crossed the street, and wouldn’t even look at her.
    Of course it would be nice to be sited, but when people find out I would rather not have site at my age, they just can’t grasp that. Sure there are times I get frustrated, even angry, like when I want to drive somewhere, or need an important document read that is in flat braille, but on the whole, these things don’t bother me a lot, and I also remember that there are some good things about being blind as well, such as the relationship I’ve had with my five Guide Dogs. I wouldn’t trade those dogs for anything. I think the future has much more to hold, and as for having blind Grandchildren, you would also be a great role model to them, and could also teach them a lot. Just my thoughts, for what they’re worth. I apologize for the novel. Didn’t mean for it to run this long.

  2. Darren Gilchrist

    I have read your commentary “Why I’m Excited about having Blind Grandchildren” and I must agree with you completely. Isn’t it interesting, and sad, that people, even blind people, assume it would be a disaster to be born with vision or hearing disabilities?

    I am an individual who was born with Usher’s Syndrome. Usher’s Syndrome affects vision, hearing, and balance. I have been hard of hearing as long as I can remember, while my vision has been deteriorating all of my life. At this point in my life, I am effectively blind, as well as being hard of hering.

    While I was about to start school, many people in the community advise my parents to place me in a school for the deaf. Fortunately, my parent were determined I would have a normal life as possible and I went to the same school with the rest of the children in our community. Once I completed high school, I went to university in the city. University was a considerable struggle for me and the faculty was not accommodating at that time, but I was able to obtain a degree in computer science with determination, hard work, and insistent on accommodation. After a number of years in the workforce, I now work for a premiere research facility at the same university. With support from my parents and family, I have a good and productive life in the mainstream world.

    Yes, I had struggles in life due to my disabilities, and I still do. However, I am no different than anyone else in this respect. It is simply a matter of degree from one person to the next. Everyone have their cross to bear.

    Why would a child with one or both these disabilities not have a good life and productive member of society like me, especially with the technology and knowledge available today to help them through life? I know I would be please with any child, whether they are disabled or not. Similar to you, I would likely have a special bond with a child with these disabilities, because I would have the experiences and understanding to relate with this child.

    Your commentary is quite thought provoking and continue progressing the rights of the disabled forward. Keep it coming.

    Thank you.
    Darren D. Gilchrist

  3. Vaughn Bennison

    Congratulations Jonathan, on bringing this touchy subject to the world! I find it terribly disheartening to hear people on one hand say they’re perfectly comfortable with their blindness, then on the other say “but I’d prefer not to be blind”!!!! When we had our children I could never understand people’s constant obsession with whether or not they could see! It didn’t matter to me then, and it continues not to! Furthermore neither my blindness nor my wife’s is hereditary. Perhaps not surprisingly both of our children are sighted but my mother-in-law particularly is still waiting, just in case. They might catch it, you know!!!! My son coincidentally went to a school where there were blind children, and as the son of two blind people was able to be more empathetic with these children. Even though we have now left Brisbane, he still counts one of them among his best friends. When someone makes a comment about blind people, he is always the first to put them right! My daughter on the other hand, informed me in great seriousness the other day that she would prefer to be in a family where no one was blind! I’m afraid I found that rather amusing! Once again, well done for saying what so many of us have been thinking for so long!

    • Jacques

      Oh dear. Could it be that my point was missed altogether? Yes, I’m comfortable in my own skin as a blind person, but that’s after more than three decades of adjusting to my blindness. I was not making the point that being blind is only bad and that it should leave one in despair. What I am saying is that it is extremely arrogant to decide for a potential child that he or she will be fine when faced with the syndrome in question. There is a huge difference between adjusting to one’s disability vs. thinking that it’s cool for a child to enter a world that will for the biggest part doubt his / her abilities. I have obtained a very stimulating career in a large organisation after many years of hard work, which of course, is an ongoing process. I am however not unrealistic about how much more comfortable life would’ve been without having to combat prejudice perceptions from sighted folk all the time. I see that Darren has a career at a university, but apart from knowing Jonathan’s occupation I don’t know what the others whom have commented do for a living. I was starting to form the idea that this particular outlook is linked to working in a blind-related environment for too long, the big fish in a small pond type of syndrome? This is also what I referred to when talking about being out of touch with the world out there. I shall try not to comment any further on this topic as I may find myself entering into a loop with what obviously is something people look at differently. I am grateful to know though that the blind friends I do have thought that the statements made in the original post for the biggest part are outrageous.

  4. Christo de Klerk

    I must say, I am shocked at Jonathan’s view. Sure, blindness doesn’t make you a lesser person in any way, but very often blindness causes extreme frustrations, inconveniences and unhappiness. To actually wish that on someone else to me is just beyond understanding. I have been blind my whole life and I believe I coped well enough having had a good career in the sighted world, but I most certainly would not want to propagate my condition to those to follow me. That is why I went for genetic counselling before I had kids. That is the responsible thing to do. I would certainly not have had kids if there were a chance they would be blind. That would border on criminality. How does that differ from knowingly infecting your partner with aids? If you feel you are coping well with your blindness, that is great, but don’t impose it on others who have no say in the matter. What you are saying in effect is: Hell, what fun it would be to have blind kids and grandkids! Man, won’t they just enjoy the challenges?

    • Ron Pelletier

      Christo, I really can’t believe how you can say something so rediculous. Comparing having blind children to infecting your partner with aids. How can you be so insensitive. I know many blind people who are completely comfortable with being blind but I don’t think I will ever find anyone who will say that they are extatic over having aids. Your comparison is as silly as saying that black people shouldn’t have children because they would be born in a minority or even saying that mixed marriages shouldn’t have children because they wouldn’t be born black or white. In my mind, better be born brown than not being born at all even if we know that there will be challenges

  5. Matthys

    Hi, it’s rather obvious to me that the innitial comment was misinterpreted. It’s not about how you handle real life situations, either with your own disability or your child’s, but about a future situation about another couple’s life.
    The cold fact is that any parent has the responsibility to carefully think about all the consequinces of bringing a child into the world where the chances are high that such a child will have a particular disability. The fact that you, or people you know, cope whith there own situation, is no guarantee that such a child will experience the world in the same way. That there are people who decide to take the chance is fine, but to say that you’re looking forward to such a situation looks like the chance factor is taken out of the equation, and that you therefore make a huge decision on behalf of someone elses life. I do feel quite uncomfortable with that.

  6. Clare Page

    Hi! It seems to me, Jonathan, that several commenters here have misinterpreted what you wrote in this blog post. The way I understand it, you are not wishing blindness on your grandchildren, in fact I’m sure you’d be just as happy if they are sighted, but you know that, if they do turn out to be blind, you can be there for them with all your experience of blindness, and that is definitely a good thing. Speaking for myself, I wish to add that, in my opinion, bringing a blind child into the world is no way an act of criminality: it may be a shock for sighted parents, but blindness should never be equated to AIDS or any other potentially deadly disease, since blindness is neither infectious nor deadly.

  7. Allison hartley

    First of all, I want to say that I never usually comment on blog posts, but I enjoyed this one immensely. In many ways, it mirrors thoughts my husband and I have expressed as two blind people contemplating having children. I now wish to address Christo’s comment. What you have implied, sir, is that blindness is equivalent to a deadly and devostating disease. What you have implied is that blindness is a slow and suffering laiden death. sentence. Finally, and worst of all, what you have implied is that if your parents, my parents, and the parents of all blind children had known about our blindness in advance, it would be better if we had never been born at all. You have implied that the contributions we have made to the world around us are meaningless. What an insensitive, unfeeling, unthinking, and quite frankly, maladjusted viewpoint! Clearly you still possess deep seeded issues surrounding your own blindness, and I can only hope that you receive the help you clearly need. Your point of view makes me feel disgusted, angry, and disappointed. Shame on you! There is enough garbage spouted about blindness as a disease from certain members of sighted society without having to endure it from a mamber of our own community!

  8. Amanda

    I am fully sighted, and, as pointed out in Jonathan’s post, the mother of two girls who carry a recessive gene where they could potentially have blind sons. They could also have sighted sons, and they could have sighted daughters. They carry other genes too – one that probably won’t make their kids particularly tall, unless a very tall daddy comes along, one which could give them red hair, a few that will probably make them academically able, and a few more that will probably see them doing all they can to ditch phys ed at the earliest opportunity. Our kids have been brought up with blindness as a norm. It will never be something new and scary, so when they and their partners come to make decisions about having children themselves, I am confident they will be able to make informed choices. They live in a time, where they can choose to let nature mix up whatever little miraculous gene combination it likes, or they will be able to employ modern science to make a pre-implantation selection. Whatever they choose, they will have my blessing, so long as they are making an informed choice, and not one which they feel pressured into by those more qualified, but less knowledgeable than themselves. Any blind child born into this extended family would grow up surrounded by positive role models, and in a braille-rich, technology-rich, opportunity-rich environment. Right now, however, my advice is most definitely keep your legs crossed and get an education. Live your life kid-free for as long as you can. See the world, get a stable job, buy a house… I can wait for grand-kids! (Oh, and by the way, Jonathan, it’s “Fur Elise” -the ‘u’ has an umlaut over it, I believe! – Meaning “For Elise”)

  9. Mike Cole

    I have enjoyed a pretty long life with lots of fellow blind people around. The decision to have kids, knowing that hereditary issues have a probability of showing up in the kids or in their kids may not have a right or wrong answer. This debate will have its partisans, hey it goes to how we value ourselves, whether blindness is one chance too far etc. There may be no end of things we pass on that we don’t know about when we decide to have children; having kids does mean that problems for the child may come about, you know diabetes, a predisposition to any number of problems. Well for many of us blindness may be one of those human blue print alterations we can embrace. I have a friend who got a vasectomy so as not to pass on retinal blastoma. In that instance the issue wasn’t blindness so much as it was a life threatening disease. So a line was drawn. I believe these decisions are hard ones and should be made with care. This is a good discussion. I would remind commenters not to judge each other too harshly, because we will not all agree; we simply won’t.

  10. Rachel

    I too heard that interview and I was stunned to hear that “passing comment”.
    I could, and I can still see why you’d say that in some small way; It is exciting to think about another family member being blind. Like you, I’m the only blindy in my family and extended family. But I could never wish blindness, deafness or anything at all outside of the ‘norm” on any unborn child. Ie, I’d never secretly hope for it either.
    The dury is out at the moment whether I’d want my sight back or not; sometimes in my life, it has been a definite “no” other times, the complete opposite.
    Even though I’m happy in my blind skin, and totally comfortable who I am in this regard, I can not forget the hard times I had growing up dealing with school, discrimination and the like.
    I still can’t understand why an inteligent person such as yourself would make a public comment of this affect. You must have known what it would do.
    but each to their own and you’re entitled to your opinion.

    • Jacques

      Rachel, the opinion part is exactly the problem. If one has an opinion which certainly we all have the right to, and it influences our day-to-day experience, it’s all good and fine. However, to willingly impose something on a potential child without the knowledge how that child would handle the situation, is arrogance in the extreme.

      I reckon we all are in agreement that many blind persons make a success of their lives, despite the prejudice perceptions out there. However, if someone could look forward, and even be excited about, having blind children or grandchildren, I perceive this as symptomatic of someone who has difficulty adjusting to the real world out there, wanting to surround himself or herself with his or her own kind. Once again, extremely self-centred.

  11. Jonathan Mosen

    I’m going to close comments on this subject now, as I feel the comments are becoming repetitive, increasingly shrill, and not adding any new perspective. But since this is my Blog, I’ll exercise my right of reply on this subject.
    First, let me clear up a simple error of fact. In her comment, Rachel says that like me, she is the only blind person in her family. But I am not the only blind person in mine. I have an older blind brother, as well as a blind nephew.
    I spent considerable time writing the original post, so I have little to add, other than to say this. I used to do talk radio when I worked in commercial broadcasting, and some of the comments in this thread remind me of the callers who used to phone in and say things like, “I’m not racist, but…” and then go on to say something outrageously racist. Here, we’ve had a few people claim to be comfortable in their own skins, then use highly inflammatory language about parents who have made considered choices that have worked out very well for them. Some people then resort to demeaning the employment choices of people with whom they disagree.
    As others have pointed out, to consider having blind offspring as some sort of tragedy is to call our own lives a tragedy. A few have used words like “arrogant” and “self-centred to describe wilfully bringing blind children into the world. I suppose that you could argue, and some people do, that any parent who brings any child into the world right now is arrogant and self-centred, what with over-population, global warming, war and taxes. But I personally know families of three or more generations of blind people. I can’t think of one where such people aren’t gainfully employed and fantastic parental role models. Blind children of blind parents, or blind children of people who have been exposed to blindness, in my view are highly likely to succeed as competent, well-adjusted blind people themselves. After all, most of us probably know of blind kids whose lives have been made worse by over-protective sighted parents, trying to shield their blind kids from harm.
    In many countries, racial minorities face discrimination every day. Does that mean it’s arrogant for them to bring children into the world because parents are making assumptions about how the children will handle the discrimination? Should religious minorities in a country not bring children into the world because they’ll face difficulties? Is it arrogant for all African Americans, or Hispanics, or Australian Aborigines, or white South Africans, or Moslems in Britain, to have kids? Of course it’s not and the very idea anyone might suggest it is repugnant to me. Blindness is no different.
    No matter what minority you’re a part of, you bring a child into the world and surround them with love and the ability to cope with whatever difficulties life may present.
    As I made clear in the original post, I do not wish for blind grandchildren more than sighted ones. As I said in my original post, I totally respect my children’s undisputed right to make their own reproductive decisions when the time is right. But given their environment, they will do just fine if they are the parents of blind children.
    This is, of course, a highly personal decision. And if there are people out there who have such low views of their place in society that they think no existence is preferable to existing without sight, then for them, it is better they not produce blind children, because the messages of inferiority those kids would grow up with do not bear thinking about. I, for one, remain excited about the prospect that I may be blessed with blind grandchildren because of the unique experiences we will share together, but I remain equally as excited about having sighted ones. I’ll be delighted to have any when the time is right, no matter what their characteristics. Of one thing I feel sure, whether they’re tall or short, gay or straight, atheist or religious, blind or sighted, they’ll face setbacks and discrimination. That’s life. But life sure beats the alternative, and they’ll have a strong extended family to see them through.
    Thanks for the discussion.

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