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People with Genetic Blindness Share Their Views on Gene Editing

“It is thus vitally important that the views of those who stand to be most affected by the development of gene editing technology, people with genetic conditions and disabilities, are documented and considered as policies and norms around these technologies are developed.”

For millennia, people with disabilities have had little to no input on important policies affecting our lives. Biomedical “cures” for disabilities are no different. There is remarkably little research on the views of disabled people toward medical treatments for disabilities. New gene-editing technologies may allow some disabilities, once thought of as inevitable and permanent, to be reversed in individuals or prevented in their children. Some of the ethical controversies around gene editing are well-known, but we hear little about what disabled people think of them.

Lily Hoffman Andrews and her colleagues sought to correct this gap by interviewing 17 adults with genetic blindness. In their study, they asked adults with either Retinitis Pigmentosa (RP) or Leber Congenital Amaurosis (LCA) how they felt about the prospect of either having their blindness reversed through gene editing, or using “germ-line” gene editing to prevent blindness in unborn children. They also asked the participants what they thought about gene-editing in general. The researchers purposely selected a sample of adults who differed in age, race/ethnicity, and how old they were when they first became blind.

The researchers found that the participants generally saw some benefits in gene-editing technologies. However, opinions about gene-editing for blindness were diverse. Unsurprisingly, there was an inverse relationship between attitudes toward blindness and attitudes toward gene-editing to escape blindness. That is, the participants who described their blindness as neutral or positive were less interested in pursuing gene editing than the participants who described blindness as an inconvenience or a medical problem. Some of the participants emphasized blindness as a positive part of who they are. For these participants, the thought of eliminating blindness, either for themselves or in the gene pool, was not desirable. There was also a trend for the participants who became blind later in life to show more interest in gene-editing than the participants who had been blind since birth or infancy. Overall, the participants’ attitudes toward gene-editing for themselves were similar to their attitudes toward gene-editing to prevent blindness in unborn children, although two of the participants showed more interest in the latter than the former, wanting the possibility of a better life for their kids.

The participants also identified a number of issues with the wider use of gene-editing technology. They emphasized the importance of informed consent and choice to accept or decline a treatment. They described the complexities of having parents make these decisions for their unborn or very young children. Another concern revolved around the high cost of treatment and the possible negative outcomes for those who either cannot afford treatment or who wish not to pursue it. For example, it was stated that disability benefits and accommodations should not be denied to those who either cannot or will not pursue treatment. Finally, some participants mentioned the language that is often used to hype up gene-editing treatments. Too often, news articles about gene therapies focus on the devastation of blindness and the miraculous benefits of treatment for those who receive it. This rhetoric grabs attention, pulls heart-strings, and can help raise money for the treatments or “sell” them to potential consumers. Yet it also fortifies existing stereotypes about blindness, further devaluing the lives of those who are not treated, and it may give false hope to people who might not respond well to treatment or who might gain only a small amount of sight.

There is no solid consensus on gene-editing technology, even in a small sample of people with the same medical condition (e.g., there were differences of opinion between participants with RP and between participants with LCA). I must note that this sample was a convenience sample and included adults who were all highly educated and all part of a blindness advocacy organization. There is likely much more support for genetic treatment in the wider blind community, especially among those who are newly blind. Yet this study suggests that if even a few people have reservations about gene-editing for themselves or their children, such reservations need to be heard and incorporated into policy. At the very least, this tells us that some people are going to decline treatment, even if the treatment is highly effective, safe, affordable and widely available.

From the authors: “It is important to discuss and promote gene editing technology in a way that is not derogatory toward blind people and their capabilities, and is conscious of the fact that many individuals may consider their blindness to be an important and valuable part of who they are. Freedom of choice and informed consent––including accurate, unbiased information about the lives of blind people for sighted parents considering gene editing for their children––are vital. And societal investment in accessibility and inclusion must not be impacted by the prospect of a ‘cure’ or treatment for certain forms of blindness, nor should access to resources be impacted by an individual’s choice to utilize or not utilize gene editing. The voices of those affected by genetic conditions and disabilities must be included, and prioritized, in societal decision‐making about gene editing.”

Read the full study here

Eradicate Ableism, Revisited: An Open Letter to Families of Autistic People

Content warning: ableism, filicide.

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“When the first thing the parent of a child with a disability hears, over and over again, is ‘I’m sorry’; when we blame disabled children for divorce or compare caregiving to serving in combat; when we assume that a disabled person is a burden …  These ideas have body counts.” Julia Bascom, Autistic Self-Advocacy Network

In November 2018, I wrote a blog post about disability filicide-the murder or attempted murder of disabled people by family caregivers. I described a widely-publicized case of attempted filicide, the Stapleton case, and focused on the warning signs that preceded the crime, as a way of trying to predict and prevent such crimes from occurring in the future. In this case, a mother blogged about her autistic teen daughter and her frequent aggressive outbursts, before attempting to kill her through carbon monoxide poisoning.

Well….My post has gone viral and received more than 3,500 views-and several comments. On this week’s post, I want to address a few comments I received that made me think harder about what we need to do to prevent filicide.

I received a few comments from people stating that they didn’t condone the attempted killing, but that they understood where the perpetrator was coming from. They then elaborated on the hardships of parenting an autistic person who behaves aggressively, stated confidently that ableism was not a factor, and pleaded for more compassion for caregivers.

Firstly, I am glad to hear that my readers don’t condone murder. We agree that harming a disabled person is no less reprehensible than harming a non-disabled person. From this point of agreement, we can have a conversation.

Secondly, caregiver burnout is certainly real. Family caregivers are human, and certainly deserve compassion. Anyone who feels like they understand the desire to harm their child, even a little bit, must be in a dark place. And supports for autistic people and their families are absolutely flawed and in need of reform. But, providing more support won’t be enough to stop filicides. The Stapletons were approved for 24-hour in-home care days before Kelli’s crime. In other filicide cases, like the killing of George Hodgins and Alex Spourdalakis, perpetrators turned down offers of help shortly before their crimes. So, offering more services isn’t enough.

Thirdly, a commenter wrote: “If you haven’t experienced autism, stop rejecting those you don’t understand and learn about what it’s like.” The commenter then suggested volunteering at a music therapy place, to “see how exhausting just 8 hours a day for a month is.”

A non-autistic parent of autistic children may know a lot about what it’s like *to care for an autistic person* but they haven’t “experienced autism.”

A non-autistic parent, brother, sister, daughter, son, spouse, or other relative of autistic people hasn’t experienced autism. A non-autistic program director, support worker, or volunteer serving autistic people hasn’t experienced autism either.

The only people who have ever experienced autism are autistic people.

I will repeat that. The only people who have experienced autism, who “know what it’s like,” are autistic people. They are the real experts here. They are best equipped to help caregivers troubleshoot challenges.

I haven’t experienced autism. When I started Disability Wisdom, I wanted to learn to be the best ally possible to those with disabilities different from my own. So, I started reading blogs written by autistic writers who generously shared their experiences, including their traumas and vulnerable moments.

One of the biggest lessons I learned is that aggression is not an inherent autistic trait. When an autistic person acts aggressively, just like when a non-autistic does, they are doing it because something is wrong. Autistic people may get triggered by different things than neurotypicals, but the principle is the same. Aggression is a “fight” response to something. It may take time to figure out what that “something” is and how to fix the problem. The trigger(s) may not be anybody’s fault. But when caregivers listen to what autistics are saying (verbally or otherwise) about their triggers, when care is taken to remove triggers and de-escalate situations, aggression and other “challenging behavior” can be reduced, making life better for everyone involved.

“Something we very strongly recommend, if you are looking for further guidance or input, is to find an autistic adult or mentor local to you, who can meet you and your child, observe their environment and interactions, and give feedback on what kinds of changes or interventions might be helpful.” From We Are Like Your Child, linked below.

But parents are still calling their autistic kids “violent” to strangers. Parents like Kelli are writing blogs about how their kids are in a “hard to love club.” Parents are publishing books like I Wish My Kids Had Cancer, promoting harmful chelation treatments for autism, or Autism Uncensored, where a mother boasted about wrestling her terrified young son into a noisy Elmo show in the name of “therapy.” As long as contempt for disabled people is given a voice, we are going to keep seeing filicides. This is what I mean when I talk about ableism, and when I say that our lives depend on eradicating ableism.

I also follow a couple of parent blogs. Two mothers of autistic children, Beth Ryan and Jess, give me hope. These mothers both have kids with co-occurring disabilities alongside autism. I have seen their blogs evolve over time. Both mothers regularly read and signal-boost the words of autistics. They both admit when they say things that are unintentionally hurtful. And most of all, they are both unapologetically, shamelessly in love with their kids. I am in awe of the love that spills through my earbuds when I read their blogs with my screen reader. Both these moms have hard days. They don’t deny that. But neither of them would ever dream of harming their children because they love their children so much.

“It is your role as a loving parent and you don’t need a behaviorist. You just need the love and compassion you already have for your beautiful child. Dealing with aggression really is a situation in life where love conquers all. Go forth now and vanquish suffering with curiosity, compassion, and calmness.” Maxfield Sparrow, Transmasculine Autistic author

Caregivers, I know you don’t have a ton of free time. But each of you had enough time to read my post and comment on it. One of you asked me to “help educate and encourage families of people with disabilities in their struggles and daily challenges.” So, I’ve carefully compiled the links below. I urge you to take five minutes and read at least one of these pages. Resources created by autistic people, as well as resources shared by Beth Ryan and Jess. Practical and philosophical advice that is time-tested to bring peace back into your home. If these pages speak to you, share them with your networks. Let’s work together to find solutions, build acceptance, and save lives.

Emergency Information for Parents and Guardians

A Checklist for Identifying Sources of Aggression

Autistic Insights on Meltdowns, Aggression, and Self-Injury

From Beth Ryan, on avoiding caregiver burnout

From Jess, on building trust and being present

What’s the Best Thing About Your Disability?

It’s easy to think of things we don’t like about our disabilities. But, what’s the best thing about our disabilities? That question may be harder to answer, but the answers are interesting. When I asked the Disability Wisdom Discussion Group “what’s the best thing about your disability?” here are some responses that came in:

  • The ability to turn the volume of the world way down.
  • The fact that I am not hesitant to assert myself and do not censor my views and ideas. And the fact that I do not get bogged down by things that a lot of folks who have not faced such a significant limitation in life might get bogged down by.
  • So many chances that I have had that I wouldn’t have had if I wasn’t blind. I know that’s strange to hear, but it’s true in my case.
  • Getting the opportunity to touch and interact with interesting things.
  • So many things come to mind: the many wonderful people I know through being part of the disabled community, and the sense of connection and solidarity I feel with them. The sense that I’m part of a long tradition of marginalized folks working toward social justice, and the fact that as awful as being met with ableism obviously feels and as much as I want it to disappear forever, it’s made me more mindful of other “isms” in our society and I hope a better ally to minority groups I’m not a part of.
  • If not for my blindness, I probably wouldn’t have met the man I love. Also, knowing the secret code of braille is awesome!
  • The ability to go really fast in my wheelchair!
  • It’s made me more empathetic assertive and resilient
  • The people I get to meet and share my story too. I wasn’t as independent before I lost my sight. I travel and speak nationally and internationally.
  • The best part of being blind? Surviving the cancer that caused it and helping to advance research and treatment of eye cancer.
  • I like the way I think and process information. I always thought that was because I was blind, but I was recently diagnosed as autistic so I don’t know anymore, but I think some of it is about being blind. I know that if I became sighted that would mess it all up.
  • The amazing people I have met due to it. I would not otherwise know such a powerful community.
  • One advantage to blindness, that is likely more noticeable to people who have experienced vision loss as an adult, is that it is a lot easier to focus on tasks requiring a great deal of mental effort when one is free from the continuous distraction of “visual noise,” that can be a real impediment to concentrating on the task at hand.
  • I love how my combination of disabilities has forced me to become more resourceful and able to solve problems. I’m able to find alternative ways to do many things that others didn’t consider.
  • I’m not enamored of being blind. But there are positives: I learned early on to question authority. My parents and teachers were often not in agreement about my education, so I knew adults weren’t always right. Also, I met the love of my life through blindness connections.
  • My ability to problem-solve and my resilience would not be at the level it is now if I weren’t blind. I would most likely not use a screen reader and therefore get to speed it up to 94% and listen to info at approximately 1,149 words per minute. Lol.
  • [Without my disability] I would not be able to listen to sounds as shapes.
  • I think one positive about my disabilities is that life would probably be very very boring [without them], I would not have met my husband, I would not also know Braille or sign language, and I would have not had the opportunity to work, be with friends, be a part of, support, and fight for PWD like me.
  • As silly as it might seem, my absolute fave part of my blindness is being able to take my eyes out for halloween. 😀
  • I guess the best lesson my disability ever taught me was the first one. I learned very early on that life isn’t fair, and it never will be. Once I got over that stumbling block, while life has been very hard at times, the rest of the puzzle pieces have fallen into place. I see so many people, both children and adults, struggling because they expect the world to somehow be fair. It’s not. Get over that and you’ll be a lot better off.
  • Thanks to Braille I can read anywhere—no light needed
  • The parking.
  • The health insurance.
  • I’d say the connections with people and the things we learn.

Before I conclude this post, I must note some more controversial answers that came up. A few people expressed that blindness, in particular, made them less judgmental or less focused on outward appearances. This comment was challenged by others who pointed out that we all can be judgmental; we might just use other inputs (e.g., accents, voice) to judge. Another controversial comment was regarding being on Social Security Disability: There are obvious disadvantages to being poor, but some felt there are advantages to being unemployed and having freedom in one’s schedule to pursue passions.

Finally, some respondents noted that with multiple disabilities, some may be more positive than others. For example, it was often difficult to find positive aspects of having a health-related disability, and easier to find positive aspects of having a sensory disability.

For Families and Therapists: Put the Blindfold Down

“The problem is that when a sighted therapist puts on a blindfold, the experience is very different from that of a blind 16-month-old. When we blindfolded college students in our lab, they felt very freaked out and frustrated because they were used to having sight. Someone who has never seen before does not feel these emotions when trying to do things. So it’s really hard if not impossible to simulate being blind from birth and never having sight as a reference point. On top of that, do any of you remember being 1? It’s equally hard if not harder for an adult to try and simulate what it’s like to be in that developmental stage. The blindfolded therapist would have trouble with some things that aren’t hard for [toddler], but at the same time will have pre-existing knowledge [toddler] doesn’t have. Instead of blindfolding, I would advise the therapist to observe [Toddler] very carefully, like a detective, learning how she plays, what motivates her and how she solves problems or attempts to get things she wants nonvisually. The therapist can then build on what [toddler] already knows. I might also advise them to learn about blindness by talking to blind adults or other families of blind kids.” (my comment on a Facebook post in November 2014).

I’ve written a lot about the downfalls of disability simulations, often using the “blindfolded experience” as an illustration. Consensus among disabled people, and some preliminary research, suggest that disability simulations can inadvertently teach negative messages about disability to the uninitiated. At best, a simulation might semi-accurately capture the challenges of suddenly acquiring a new disability. But simulations cannot capture the experience of living with a disability for a lifetime. And, they definitely cannot capture the experience of being a young child with a disability, as I will explain in this post. Yet many well-intended family members, friends, or professionals serving young disabled children embark on disability simulations to try to “understand the child’s world” or “walk in their shoes.” Here’s why that won’t work:

Let’s take blindfolding as an example. An adult puts on a blindfold. They engage in their regular adult tasks, and they try to compare their experience to that of a young child who has always been blind. The blindfolded adult will experience “darkness” and the associated fear, confusion, and frustration that can emerge when one is accustomed to doing things visually. In contrast, the person born without sight never sees “darkness” because they have never seen light. For them, the dark world is normal, not particularly scary or confusing without sight as a reference point. The blind child will also adapt to their world over time, first through their own problem-solving process, and then later by learning formal skills such as braille and cane travel. An adult wearing a blindfold will struggle without the benefit of time and experience doing things nonvisually, especially if they compare their blindfolded experience to their typically-sighted one. Thus, the blindfolded adult is apt to conclude that basic tasks will be challenging, scary, or frustrating for the young blind child.

But there is another issue, too. To really understand the experience of being born blind, one must forget everything they have ever seen. Further, to simulate what it is like to be a young child, one must forget all the knowledge and experience they have accrued over decades of development. It is truly impossible to simulate the mental state of being a young blind child, without any visual memories and with very little life experience in general.

When you combine these two things, a blindfolded adult will likely conclude that some things are more challenging for the blind child than they actually are. At the same time, they will likely underestimate other challenges for the child that are more developmental.

Let’s take a common situation. A blind child is having trouble learning to self-feed with a spoon. The parent or therapist puts on a blindfold and tries to eat some yogurt. They struggle and get yogurt all over the place, then conclude they really understand why the child is struggling.

The blindfolded adult might have trouble finding the yogurt, the spoon, or feeling when the spoon is loaded. Blind children will develop strategies to bypass these challenges. However, the young blind child may struggle to learn how to properly hold a spoon because they have never seen someone else modeling the skill. That is a developmental issue which the blindfolded adult, already knowing how to hold a spoon, might totally miss. The adult’s pre-existing knowledge gets in the way of empathizing with someone (like a child) who lacks that knowledge. And, blindfolds are unable to fill that gap, because they can’t take the pre-existing knowledge away.

Adults who don blindfolds do so because they want to connect with a blind child’s experience and provide better support for the child. If blindfolding is counterproductive, what else will work instead?

Well, if we can’t simulate being born blind, the best information we can get will come from others with firsthand experience-people of all ages who were born blind. These individuals can comment on their unique experiences, struggles, and successes. Further, when aiming to support a specific young child with a disability, we cannot “walk in their shoes” directly, but we can learn from them by observing them, getting to know them, and listening to them.

Going back to the food example, blindfolding might lead to the conclusion that a blind child cannot eat certain foods without a lot of mess, or that they need intensive assistance. In fact, all they may need is someone to physically show them how to hold a spoon. Instead of putting on a blindfold, an adult may want to talk with blind adults, older children, and parents of blind children to learn strategies for teaching a blind child how to use a spoon.

I applaud those who want to learn more about the experience of their disabled young family members or clients. I encourage you to peruse the wealth of information generously offered by disabled people. Read our blogs, join our advocacy groups, and learn how to truly partner with us.

Read more about my work on disability simulations here

On Grief, Expectations, and Congenital Disability

I spend a fair bit of my time talking online with parents of disabled children. Especially parents of congenitally blind children, like mine. My disabled friends and I go into these parent spaces to offer hope and resources. Sometimes, though, we encounter statements that can be triggering for us. Parents describe feeling “devastated” upon learning that their child is like us. And, often, they describe feelings of grief.

When someone becomes disabled later in life, or their disability progresses, grief can be a natural response. Acquired disability comes with losses of functionality, and a loss of nondisabled privilege. It makes sense to me that family members of those with acquired disabilities will also grieve the losses of things their relative was once able to do or enjoy.

Grieving disabilities that start at birth, though, is something that seems less intuitive to me. It’s not necessarily bad, but it takes a little more unpacking.

I was ten years old when I first learned about my parents’ grief they felt after my diagnosis as an infant. I won’t go into their story here, because it’s their story, not mine (and they’ve told it elsewhere). But, learning about my parents’ grief made me sad. I was a good girl who wanted to please my parents. And I wanted to believe that my birth was nothing but a joy for them. A little self-centered perhaps, but I was ten. It was painful to hear that my parents were disappointed by something about me that wasn’t even my fault.

As an adult, I’ve come to accept that it’s not all about me. And, I am grateful that my parents moved beyond grief in their own way. But, it still pains me to hear other parents say they grieve when they have a child who is born like me. I wonder, What exactly is it that they’ve lost?

This issue of grieving congenital disability came up recently on the Disability Wisdom Discussion Group. In that discussion, a few parents affirmed that parental grief is partly related to societal misconceptions about disabilities. But, they also said that some of this grief could be experienced by all parents. Because, they said, parents have high expectations for their children’s futures. They have dreams at the outset that, disability or no, can’t always come true.

I thought about my own experiences of grief. I grieved when my grandparents died. I’ve had similar feelings, though less intense, when I had close relationships end. Those losses were clear. But I also felt grief when I had grant applications rejected. When you write a grant, after all, you are building up expectations of what a new project will be like. You have to dream up a budget and a list of deliverables that will emerge from your project. So after you’ve done all this, and get a (sometimes bluntly rude) rejection decision, it feels like a project was lost, even if that project wasn’t ever actually a thing in the first place.

Of course, expectant parents do the same kind of thing. They name the new baby. They dream about experiences they will share with the child. They build up expectations. If those expectations aren’t met, they feel a loss.

I thought about the expectations I had for a spouse. When I was in college, and first getting involved with disability rights, I swore that I would end up with a blind man who shared my passion for blindness advocacy. It was such a big part of my life that I couldn’t imagine not sharing that in common with a partner. I dated a few blind guys who did, indeed, share that passion. Then I fell in love with somebody who is sighted, and while he is passionate about disability justice in his own way, he’s not big on the NFB events.

There was a point when I did feel a sense of loss at not having my husband go with me to all the banquets and other big blindness things I attend. At some point, though, I realized that it was unfair to expect that of him. Finding him was a gain, not a loss. I shouldn’t impose my own expectations on our relationship.

It’s natural to want the best for children before they are born. But, perhaps we can broaden our idea of what a positive future might look like, and acknowledge that disability can be a part of that. Children will not always share all of their parents’ interests, and in the same vein, children may not share all of their parents’ abilities. But no matter what, their birth is still a gain.

I want to see a day when having a disabled child isn’t such a surprise. It just is, and it’s something we expect could happen. And there may be sadness related to the hard parts of disability, the medical needs, the challenges or the exclusion. But, what if congenital disability wasn’t seen as a loss or a subtraction, but just something we come to expect and embrace in a subset of the population?

I do agree with the parents in one important way. Providing accurate information about disability experiences is one way we can help mitigate some of the grief that new parents feel. By offering information and hope, we can not only help reduce the grief, but also help equip parents to move past it to a point of acceptance. That is why I stay in the parent spaces, if they’ll have me, and that is why I post on this blog. I hope that by sharing my own experiences, and amplifying the voices of other disabled people, we can redefine the meaning of disability for the generations not yet born.