This is another post that will likely attract ire. However, my own personal experiences - and the experiences of loved ones, friends, and students - compel me to speak up and counter what I feel is a dangerously distorted "theory" of the world whose accuracies are marred by much that is partially or wholly false.
Which personal experiences are germane to this discussion? When I was in my early twenties, I developed a severe, systemic, and rapidly progressive form of rheumatoid arthritis. It started with swelling and pain in the first two fingers of my right hand. Within months, it had rendered both my hands barely functional claws. Only a year later, I walked like an eighty-year-old lady, as the disease had taken out my feet, ankles, and knees. Fortunately, it was at this point that I was finally diagnosed and prescribed my first medications, and as a result, my condition now can be best described as "stable." I have never experienced a full remission and have never recovered full functionality, but at least the condition has been substantially slowed and I can actually move.
I know I am better off than many; I'm still basically ambulatory, for one. But there are limits beyond which my body cannot go and many ordinary activities that my body simply cannot do -- which is why I have often chosen to rent a cart for large conventions and why I have trouble at subway stops that lack elevators. I do know, intimately, how tough it is to navigate, say, Dragon Con when you're wheelchair-bound. I do know, intimately, that many spots in older cities are essentially inaccessible if you have mobility issues. I remember, vividly, breaking down one night after discovering that a certain retro party my friend wanted to attend in lower Manhattan could only be reached by climbing three flights of very steep stairs.
I also have two immediate family members who are in far worse straits than I. My mother suffers from an as yet unidentified immune deficiency that has left her open to a number of nasty infections, including one that has damaged a lobe of one of her lungs, one that has damaged her hearing in one ear, and one that basically destroyed what was left of her right knee (which had already been disabled by arthritis and replaced). She also has severe degenerative disc disease, which means, like me, she deals with limited mobility and chronic pain. My brother, meanwhile, was born albino and consequently has a vision impairment that has left him unable to do many things that we sighted folks take completely for granted.
Here's the thing: Matt's experiences and mine are different. I will never be able to see exactly what Matt sees with his eyes, and unless Matt also develops my disease (or something similar), he will never know precisely what it's like to walk around in my skin. But because we lived under the same roof for roughly twenty years and we care for each other profoundly, we both still understand, at least on some level, the challenges the other one faces. Over the course of our relationship, we've developed imaginations capacious enough to comprehend, imperfectly but still sincerely, not only the differences we find in each other but also the differences we find in others. This is what happens when love leads the way.
All of these experiences - in addition to others I have yet to share - helped to drive my deeply disturbed and even angry reaction when a self-described "disability activist" visited my blog and started pushing a very aggressive view of the relationship between disabled persons and the larger society that is influenced, according to his own description, by the "social model of disability."
Since this is probably going to be very long, I think a cut is in order.
- "The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives."
- "The social model of disability says that disability is caused by the way society is organised. The medical model of disability says people are disabled by their impairments or differences. Under the medical model, these impairments or differences should be 'fixed' or changed by medical and other treatments, even when the impairment or difference does not cause pain or illness. The medical model looks at what is 'wrong' with the person, not what the person needs. It creates low expectations and leads to people losing independence, choice and control in their own lives."
- "A wheelchair user wants to get into a building with a step at the entrance. Under a social model solution, a ramp would be added to the entrance so that the wheelchair user is free to go into the building immediately. Using the medical model, there are very few solutions to help wheelchair users to climb stairs, which excludes them from many essential and leisure activities. [...] A child with a visual impairment wants to read the latest best-selling book, so that they can chat about it with their sighted friends. Under the medical model, there are very few solutions. A social model solution makes full-text audio recordings available when the book is first published. This means children with visual impairments can join in cultural activities with everyone else."
- "According to the medical model of disability, ‘disability’ is a health condition dealt with by medical professionals. People with disability are thought to be different to 'what is normal'or abnormal. ‘Disability’ is seen 'to be a problem of the individual. From the medical model, a person with disability is in need of being fixed or cured. From this point of view, disability is a tragedy and people with disability are to be pitied. The medical model of disability is all about what a person cannot do and cannot be. The social model sees ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others. A social model perspective does not deny the reality of impairment nor its impact on the individual. However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity. The social model seeks to change society in order to accommodate people living with impairment; it does not seek to change persons with impairment to accommodate society. It supports the view that people with disability have a right to be fully participating citizens on an equal basis with others."
Unfortunately, "the social model of disability" arrives at these undeniably correct conclusions through intellectually dishonest straw-manning and false dichotomies -- and the "disability activists" who apply this view to practical politics effectively - and ironically - silence many disabled voices in arrogating to themselves - and themselves alone - the ability to define "the disabled community" and describe what disabled people want and need. Moreover, the utopian goals these activists adopt deny several critical realities and ignore our obligations to the able, who are equally human and thus equally deserving of our consideration -- and their belligerence in espousing their beliefs ultimately wounds human solidarity and inhibits genuine progress.
Let's talk first about how disability activists characterize the so-called "medical model." To be frank, I am unaware of any real individual currently working in the medical field (or in charitable organizations) who actually holds the view that the disabled are out of luck until a full-fledged cure can be found. Yet the quotes above definitely suggest that people who devote their time looking for remedies for various impairments oppose reasonable accommodations in the meantime. I have seen absolutely no proof that this is a widespread view. Instead, the people researching and raising funds to cure autism, paralysis, blindness, etc. seem to be overwhelmingly motivated by a desire to ameliorate suffering. What's wrong with that? And why should that interfere with attempts to enhance accessibility? To borrow one of my friends' favorite expressions, why not embrace the healing power of "and"?
I've also noticed a belief among these activists that, should a cure for an impairment actually be found, they would certainly be forced to embrace it. Granted, if our national governments were to start treating disabled people of obviously sound mind against their expressed wishes, every libertarian bone in my body - and I do have quite a few - would find that a fundamentally abhorrent replay of the forced sterilization programs of the early 20th century. But again, I have seen no evidence that coercion would be an inevitable consequence of such a future advance in medical knowledge. One of my minor concentrations as an undergraduate was in bioethics; believe me when I tell you that the modern-day medical profession is pretty well strapped down by stringent guidelines regarding informed consent. The only way this institutional apparatus could possibly be broken down is if we accept trains of thought that define the human person and "lives worth living" according to abilities and not according to essences -- or if we voluntarily back a soft totalitarian state that micromanages our personal affairs "for our own good". And oh, just FYI? People like me - who are "classically liberal" and/or Christian - are not your enemies on this front.
At base, these activists apparently fear any definitions of what is normative. To be sure, there are many valid historical and personal reasons for this fear. To reiterate what I said earlier, the disabled have been the targets of abuse and worse for failing to live up to code. Still, this does not justify philosophically indefensible retreats into relativism. There is such a thing as an observable human "normal." Said normal has a decent spread and is pretty diverse, but contrary to the claims of disability activists and "neurodiversity" enthusiasts, it is not infinite. Evolution, in a rough and scattershot way, shaped our bodies and our minds to deal with the circumstances in which our forebears found themselves -- and those circumstances, let's be honest, were not overly hospitable to those who fell outside a certain range. (I'm sure, for instance, that even Matt would agree that an above-ground land mammal who depended on hunting and gathering to survive would see no evolutionary benefit in being blind.) But - and this is really important - acknowledging this reality in no way necessitates that we be cruel to those who find themselves on the skinny bits of the bell curve through genetic accident or disease. What is "natural" and "biological" does not and should not dictate what is right and good. Thus, an ethical and inclusive approach to disability does not require us to deny that norms exist.
Disability activists insist on their own agency and their right to determine the course of their own lives. More power to them, I say. I just wish they would actually be consistent in applying this principle to others. Alas, like many similarly inclined ideological groups, these activists posit a uniform "community" where none actually exists and seem to deny that the experience of disability could ever be particular -- or contrary to their view of the world. "We don't want to be cured!" they cry. "Society is prejudiced and must learn to adapt to us!" But who is this "we" they speak of? It certainly doesn't include this autistic writer:
"For far too long nondisabled (Yes I'll say it people with Aspergers are NOT truly disabled.) neurodiversity types have been the only voice of autistic adults out there. Neurodiversity ideologues like Laurent Mottron are hijacking serious autism research and threaten to take it over. The neurodiversity movement represents the single greatest threat to the well being of all autistics, just as Bruno Bettelheim and his followers did when I was a child. Both are based on a dangerously unrealistic and limited picture of what autism is.
I AM a puzzle.
Neurodiversity does not speak for me."Nor does it include this writer, who also has ASD:
"I can't speak for all, but as someone with Autism I can say these people with my same condition who claim to speak for me do not. I do not believe these people speak for the majority of people with AS. No one else I have known with Autism has actually said they liked having it and I have yet to actually meet these people who do."It doesn't include Paul, a Facebook friend with ASD who had this to say:
"I don't have a physical disablity (although my knees are causing problems) but my Aspie condition has caused me problems and yes I'm curious about a "cure". Mind you, I'm not sure that I'd trust anybody who claimed to have a "cure"."It doesn't include these disabled individuals:
"I became handicapped in college, on a walking campus with gently rolling hills that look great until you need to use a wheelchair. I used a bike instead, because the pain of using pedals was less than the pain of being a pedestrian. I adapted. I did not force the world to adapt to me. I asserted my legal rights on occasion, but only if there were no other reasonable course of action.
"When the pain first hit, I was unable to cross my own dorm room without holding on to something. I still stuck it out. I wasn't late for class any more than the average student. I encountered difficulties simply because so many students were unused to the idea that walking with a cane means I need a wider path, but they got used to it and so did I. Most of them still didn't understand what I was going through, but I didn't need to trumpet out my anti-privilege like so many seem to today.
"Do I need a cure? Hell yes. I adapted, but that doesn't mean I want to stay like this. I also happen to think the flushing toilet is a great advancement over the chamber pot.
"I used to be active. I was a martial artist. I still long to spar. I miss going for hikes in the woods. I'd like to mountain climb, too, or at least try that climbing wall at the fair. I'd settle for being able to walk from one end of my house to the other without having to concentrate on every step.
"Who wants to live like this? No one. Who thinks I don't need a cure? 100% of them are people who don't live like this." - Matthew B.
"I have a number of autoimmune disorders--dysautonomia, adrenal fatigue, and postural orthostatic tachycardia syndrome. Along with the POTS, I have a wonky heart with mitral valve prolapse and Wenckebach syndrome. My mobility issues are due to malformed knees, an arthritic ankle (the bones were splintered in an accident), and lymphedema. I have diabetes, hypothyroidism, and asthma. My lungs have decreased capacity due to recurrent bouts of pneumonia. Add little things like blepharitis and rosacea, and I think I qualify for Three Stooges Syndrome.
"Society does not seek to oppress the disabled. Don't assign ill will to ignorance. Generally speaking, society is oblivious until informed. When informed, much of society will do what is within their power to accommodate a disability. It's often misguided and ineffectual, but there have been great strides made in the last couple of decades.
"A healthy person cannot fully understand the particular limitations of each and every disabled person, but a person with a certain disability isn't going to fully understand the limitations of a person with a different disability. That isn't for lack of empathy--it's from a lack of experience.
"There is a great difference between adapting to a disability, disease, or condition and embracing it. Those who want to claim disability as a special "race" don't speak for me. I struggle daily to live beyond my limitations. They hold me back--they certainly don't enhance my life. I'll gladly accept cures!" - Joanne W.
"Narcoleptic here - it's one of the "invisible" disabilities. Would I like a cure? Hell yes. Am I pissed that it's not a high priority for a cure? Nope - it's not a common condition and there are plenty of other people who suffer more than I do.
"Most people once they know someone has a disability or other issue will do what they can to adjust and work with it. Not realizing that a hotel doesn't have decent accommodations for the wheelchair-bound is not a sign of prejudice: it's a sign that the organizers don't know anyone in a chair well enough that it occurred to them to check.
"The argument about wanting to cure disability X being bigotry is just idiocy. A disability keeps whoever has it from the full human range of experience. That some are able to live a pretty full life despite that is testament to human strength and adaptability, but it doesn't mean we shouldn't try to cure it." - Kate P.
"I have ankylosing spondylitis, a progressive, degenerative, genetic disease that causes chronic pain and limits joint flexibility. When I became unable to work in 2007 at the age of 54, I was permitted to retire early on a medical disability, with no loss to my pension or to social security benefits. Far from persecuting me, I experience society as helpful, with people making way for me as I trudge through crowded walkways with my cane, and I appreciate their kindness when someone offers to help me carry packages or open a door. Before retirement, I was a middle school counselor, and I impacted the lives of young people every day. If this disease could be cured, so that I could return to work, I'd do it in a second. The burden of pain, and the negative side effects of daily narcotic use, are experiences I would gladly leave behind." - Pat P.And it doesn't include my brother, whose emailed reaction was probably the most irate:
"I find it infinitely...infinitely more offensive that anyone would ever ask me a question as manifestly stupid as "if you could fix your blindness, would you do it?" OF COURSE I would, you idiot! Then I could SEE! Do you know how annoying it is to not have the freedom to drive myself to functions, to rely on my wife for transportation, or on carpools for work, or on public transit, as unreliable and unpleasant as it invariably is? Do you know how much pain it causes me that I can't see what I'm typing within sitting six inches for the damned screen? Do you realize how hard it is for me to make new friends, because I can't judge peoples' facial expressions or recognize people in crowds? Do you understand how heartbroken it sometimes makes me that I could love the game of baseball so much and never be able to play it?
"No...my blindness has nothing to do with who I am...all it is...is something that stands in the way of being who I want to be fully. I want to be involved in charity and in politics. I want to belong to social clubs and writing groups. I want to be able to drive my wife to the hospital if she goes into labor. I can't do any of those things because my eyes suck. So fuck you, anyone who wants to call my blindness some crucial piece of who I am."Disability activists, the record suggests, will now scramble to come up with reasons to disqualify these voices. They will, for example, deploy variations of the "false consciousness" hypothesis, claiming that these individuals have simply been trained to be "self-hating" by societal prejudice. But in asserting that my brother and the others are simply patsies in society's power structure, activists will hypocritically strip them of the very agency the "movement" supposedly champions. If, as disability ideologues say, the disabled have the right to shape their lives as they see fit, that should include the right to seek a cure - or to refuse to resent what is normal - without being slandered as traitors to the cause.
Activists might also claim that the speakers above are "the minority." First of all, that's really hard to prove given that a not insignificant number of disabled persons cannot actually speak for themselves. (Note: A fifth of the autistic population is non-verbal. Then there are the people with severe ID, the people in persistent vegetative states, the people with Angelman Syndrome, etc., whose communication abilities are also profoundly limited.) Secondly, even if all my examples did represent the minority, you can't use that argument to squirm away from my basic point -- at least, not if you're an adherent of liberal pluralism, which is the very philosophy that theoretically under-girds your demands for consideration. If the disabled minority within our society must be protected as a matter of course, that means a minority group within the disabled population also must be protected.
And let's unpack what is meant by "society must adapt to us." How far does that go? One thing I notice about the people who advocate for this point of view is that they tend to be on the high functioning end of the scale. They're able enough to write eloquent blog posts and books espousing their ideology, which suggests that maybe they can be incorporated into mainstream society without excessive disruption. For them, at least, I can see their point. But what about disabled persons who are self-injurious? What about disabled persons who are violent? What about disabled persons who are delusional or simply cannot care for themselves? The skim-until-offended crowd has no doubt already left to denounce me as a bigot who claims that all disabled persons are violent and incapable, but that is absolutely not what I'm saying. I am saying that some disabled persons are extraordinarily difficult - even impossible - to mainstream without ill-serving everyone else. I once witnessed a teenager with ASD physically attack a peer at a youth group function because that peer had annoyed him. Again, I'm not saying all autists are prone to this. But what could I have done if the altercation had escalated into a full-on brawl? The kid in question was about 6' 6", and I'm 5'2" and have disabilities of my own. Does a disabled person's right to be included extend to tolerating his tantrums -- even if they endanger other people around him? Where do we draw the line? And how much do activists want us to spend to establish accommodations in every public place?
Maybe disability activists do recognize that there are valid limitations to toleration. I certainly hope so; otherwise, what they're asking is inherently unreasonable. Just as the disabled child has a right to an education that serves his needs, the typically-developing child has a right not to be pounded by a disabled classmate who can't control his emotions.
If you've stayed with me this far, I applaud you. Not many people are willing to stick around for more than 4,000 words of analysis. But here's the good news: I'm almost done. I only have one last thing to address, and that is the attitude of disability activists. Here, Kate, Joanne, Pat and the others basically echo my own feelings. The angry, adversarial posture favored by these activists - and their persistent lack of charity in interpreting difficulties and slights - is something I cannot accept because it is more likely to drive off potential allies than to move them to act on behalf of disabled persons -- and because it encourages the sort of maladaptive thinking that leads to unhappiness and mental illness.
In a recent post discussing Black Lives Matter, I explained the rider and the elephant:
People are led by their guts. To borrow Jonathan Haidt's analogy, our rational mind is a tiny rider sitting on the back of a huge, lumbering elephant of instincts and prejudices -- and more often than not, the elephant decides and the rider rationalizes after the fact. [...] And how does this reality apply when it comes to our raging campus activists? Jeb Bush correctly observed in last night's debate that you can't bully yourself into the presidency; likewise, you can't bully yourself into a racially just utopia because bullying repels the elephant. Mobbing people and belligerently shouting at them puts their unconscious minds on high alert -- and a mind on high alert is a mind that cannot listen.The same principle applies here. As a person with rheumatoid arthritis, I have encountered quite a few obstacles. But every time I have bumped up against a world that is not built for me and for my needs, you know what I've done? I've politely asked for help. I haven't been shy about asking for a seat in a crowded bus or subway car. I haven't been shy about asking total strangers to open bottles for me or help me carry my bags up (or down) to street level at a subway station with no functional elevator. I haven't been shy, but I haven't been rude either. And you know what? Every time I make my needs known in calm and clear language, the scales drop, the light dawns and - astonishingly! - able-bodied people generally come to my aid. Imagine that! A little diplomatic communication often goes a long way -- and it's something any adult can do.
In the end, Joanne is absolutely right: You shouldn't ascribe to ill-will what may in fact be a simple - and easily correctable - lack of awareness. And you shouldn't attack people for expressing sorrow over your disability either. In both cases, what you are doing is engaging in a cognitive distortion known as mind-reading. You are divining evil motives and prejudiced beliefs where none may exist. And if you go out into the world while running on the assumption that everyone hates you and wants to see you fail, a tragic thing happens: it becomes a self-fulfilling prophecy. Your toxicity will affect everyone around you for the worse.