Old Video, Fresh Ideas

22 years in Independent Living and I never saw this video about Ed Roberts until yesterday. There’s nothing in it I didn’t know from other sources, but I really feel like I missed out not seeing this much earlier in my Independent Living career.

The video does have a bit of a corporate instructional film feel, but focus on the words, which are as relevant today as they were in the early ‘90s. In fact, I am amazed at how current the content really is. Just update the technology from a “word board” to an iPad, make the music a little more energetic, (or just get rid of it entirely), shoot it in high-res digital, and this could be made today.

Sadly, we don’t have Ed Roberts anymore. He died in 1995. But, there are other people still living who share Ed Roberts’ philosophy and commitment. You might find them working at your nearest Center for Independent Living. If you want to understand what Centers for Independent Living are and what they are supposed to be, this video is an excellent place to start.

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An Important Clarification On Assisted Suicide

NDY Is Not Working in Coalition with the Family Research Council – And Here’s Why

Diane Coleman, Not Dead Yet - January 19, 2015

This statement from the disability rights organization Not Dead Yet was prompted by a specific, “inside baseball” sort of event, but the statement turns out to be a very effective explanation of why many disabled people and disability organizations oppose legalization of assisted suicide and euthanasia. Plus, it underscores crucial differences between disability opposition to these causes and the “right to life” movement.

The disability rights argument against assisted suicide and euthanasia is almost entirely different than the traditional moral / religious arguments against them, and organizations like Not Dead Yet should not be conflated with conservative and religious organizations like the Family Research Council and Right To Life. There is definitely some overlap in regard to policy, but very little in ideology.

The fact that I oppose assisted suicide and euthanasia doesn’t indicate that I’m a right-winger or religious fundamentalist. Far, far from it. By the same token, agreement on this particular policy issue doesn’t mean that religious right groups necessarily understand or really care about the disability rights perspective.

You can see similar clarifications being mapped out right now over Senate Bill 334, which would ban abortion based on disability or gender. I admit, it’s messy. But the distinctions make sense and they are more or less consistent.

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More Ways To Understand Disability

Another way to understand the very different perspectives people have on disability is to think in terms of the three main academic divisions used by most colleges and universities:

Sciences

Social Sciences

Humanities

Just like in universities, these are three equally valid and important perspectives. Which one you choose depends partly on your personality ... what interests and excites you, and what doesn't.

Also, just as in universities, we really should all have a least a basic familiarity with with all three approaches.

How do disability issues fit with this model? Like this, I think:

Sciences:

Medical research

Treatment and prevention

Rehabilitation

Adaptive technology

Social Sciences:

Disability policy

Disability throughout history

Disability as culture and identity

Ableism … disability prejudice and discrimination

Humanities:

Art, music, and writing reflecting the disability experience

The language of disability used by the disability community and broader society

Philosophy, religion, ethics, and disability

How society sees disability … how disabled people define disability identity

Which of these poles of disability thought do you tend to gravitate towards?

What Are We Arguing About?

When you start reading around the disability blogs, as I did a year and a half or so ago, you get the impression that there are some pretty big arguments going on just under the surface of things. People with opposed views on disability topics rarely clash with each other directly, but there are obviously some high-stakes disagreements and misunderstandings sparking a lot of passion. The problem is that the terms of debate are almost never spelled out, and a newcomer to disability culture can become easily confused. What’s it all about?

I don’t want to fan the flames, but it might be useful once in awhile to try to articulate just what it is we are fighting about … or being passive-aggressive about as the case may be.

For example:

- Is disability a complex web of medical, social, and political factors that all affect how people with specific impairments live? Or, is all the social and political stuff a sort of mirage, distracting us from the pain and hardship of unpleasant medical conditions we should be trying to solve? This argument is at its most concentrated when there is a clash between efforts to eliminate certain disabilities entirely, and a view that doing this would be tantamount to genocide. However, a more moderate but similar argument goes on over where people prefer to direct their attention and money … to making life better for disabled people, or to ridding people, and society, of disabilities?

- What is autism? Is it a baffling and often debilitating brain dysfunction that kids and families suffer greatly from? Or, is it a very particular kind of brain and perception difference where autistic people are essentially ok if they’re allowed to be themselves and use their coping mechanisms, but parents and other “neurotypicals” make them miserable by trying to force them to “act normal”? It’s hard to stake out a middle ground here. It feels like one or the other side is not only wrong, but tragically, horrifically wrong. People disagree over the true nature of a few other specific disabilities, but autism seems to be the most divisive.

- Are most intellectually disabled people quite capable and fully self-aware, and just in need of some extra help and guidance to live satisfying lives? Or, are most of them severely impaired and in need of constant, life-long care and supervision? Most people would say some of both, and lots of in-between. But, one side tends to stress a more minimalist, positive view, while the other side focuses more strongly on needs and what they see as serious, insolvable deficits. The two sides seem to be looking at two different groups of people, while speaking as if to encompass them all.

- Are people with substantial care and assistance needs better served in their own homes with visiting nurses and paid personal assistants? Or, do they get better, safer care in specialized care centers like nursing homes and “assisted living facilities”? This argument is inseparable from the question of which model is more financially sustainable. Not to mention … whose needs are paramount, the person with a disability, family, or care providers?

- Which is more crucial to successful life with a disability … positive thinking and good behavior of the disabled person, or accessibility, accommodation, and respect from society, towards the disabled person? How we answer this question seems to depend a lot on which we believe is easier to change … ourselves or society. The answer to that is not obvious, either way.

- Is disability prejudice the result of ignorance or evil, confusion or hostility? Does it make a difference?

If you have read even just a little bit of this blog, and of other blogs by people with disabilities, you should be able to guess how most of us would answer these questions. Yet, they are questions, and the opposite answers are not so easily dismissed, once they are fairly laid out.

I have no grand point here. I just think it’s important that we remind ourselves of what we believe, and of what others believe who disagree with us.

A Little Moxie Summer Blog Hop - "Talking Raw, Talking Real: Challenges Related to Disability"

Most of the time, the challenges related to disability aren’t about disability alone. In my experience, and observing the experience of others, 75% of the time, it's actually about disability and something else:

Social stigma … Everything from mild awkwardness and ignorant comments, to open ridicule and bullying. They invade our space when we least expect it, an it hurts in a very personal way. In some ways, it’s the least significant problem we face, but in other ways, it’s the most painful.

Discrimination … Prejudice put into action, where it concretely affects our mobility, inclusion, and opportunities. People can think what they like about disabled people, but prejudice causes real, lasting harm when we lose a job opportunity because of it.

Poverty … Money can’t buy happiness, but it can buy off a lot of the hardships of many kinds of disabilities. Money can buy ramps, lift vans, decent wheelchairs, tutors and therapists, and pay other people to help us do the things we can’t do for ourselves. The flip side is that when we don’t have money, everything about our disabilities becomes exponentially harder.

Segregation … Being cordoned off into “special” programs of any kind may seem to have superficial advantages, but the harm is deeper and longer term. Separate is not only unequal, it is artificial, inauthentic, and it provides cover for neglect and abuse. Plus, segregated programs are almost always maintained for the convenience and comfort of people other than the actual disabled people they’re supposed to serve.

Lack of agency … In little ways and big, we are often treated as something less than complete human beings. Most people don’t realize they are doing it, and very few believe we are literally inferior. Yet, we are treated like a bundle of symptoms and behaviors. Adults are treated like children or tweens. People speak to the person with us instead of directly to us. Even our families sometimes seem to forget that we are people ... not symbols or tests of their moral character.  In many ways, the biggest challenge of disability is simply to assert and maintain our basic personhood.

Disabilities impose themselves every day, and occasionally they can be very sharp and punishing. But disabilities are different and distinct from the hardships associated with them that are imposed from the outside. The good news is that most of them are easier to fix, both personally and systemically, than most disabilities. It doesn’t always seem that way, and lots of disabled people would disagree, I think, but I believe it is true.

Disabilities are largely beyond our control. Human behavior is not. The real challenges of disability are the “… and other things” that go along with it.

A Little Moxie Summer Blog Hop - "Coming to Terms with Disability in My Life"

This will be an uncharacteristically short blog post for me, because I kind of deal with this issue of “coming to terms” all the time at my blog, Disability Thinking. Just visit there and browse, and you should be able to figure out how I have and have not come to terms with disability in my life.

I will only add this …

I am 47 years old. I have had disabilities all of my life. I have been exposed to a wide range of different ideas about disability, approaches, disability cultures, and philosophies. Yet, although I mostly relate to a generally “positive” view of disability, I can’t entirely buy into the idea that disability is “great” or “awesome” or “special”. Nor does it feel right to say it’s a “tragedy” or “handicap” or “illness”.

To me, disability isn’t a good thing, or a bad thing. It is just a thing. I used to think that was a cop-out, but more than ever, I really think that’s my answer … the terms I have come to with disability. Any other answer seems off-target and reductive.

Fault Lines in Disability World

One of the things that takes people by surprise when they start to discover the true size and diversity of the disability world is how divided it is. Disabilities, themselves are very different, generating some huge differences in experience. Disabilities also cut across all other groups and subgroups of humanity, including gender, race, nationality, philosophy, ideology, and economic status. So, every disabled person is “disabled”, and also “X”, “Y”, “Z” and many other designations. Also, there are several different fundamental ways to see and understand disability, each of which depends partly on personal experiences and partly, I believe, on each person’s underlying personality and world view.

Just for fun, I decided last night to try and map out the main “fault lines” in “disability world”. I call them fault lines instead of divisions because like actual fault lines on the earth’s crust, a piece of fine china, or an eggshell, the divisions aren’t always visible, and only become real cracks under pressure. The disability community can often look unified, and from the outside it’s easy to see how similar we are, but the fault lines are there, and tend to follow some logical paths.

Here is what I have so far … with a note on each about my own status:

Disabled from birth / disabled later in life.

I have had disabilities since birth.

Physical / sensory / intellectual / mental health disabilities.

I have physical disabilities.

Stable disabilities / disabilities that are progressive / disabilities that cause considerable pain and illness (chronic illness or “spoonies”).

My disabilities are mostly stable, though lately I have started to feel like I might be becoming a “spoonie”.

Visible (noticeable) disabilities / invisible (not immediately apparent) disabilities.

My disabilities can be seen right away.

People with disabilities / families of people with disabilities.

I am a person with disabilities, and nobody else in my immediate family has disabilities.

Medical / cultural / political approaches to disability.

I tend to be most interested in the political implications of disabilities, though recently I have become more interested in disability culture.

Disabled people from secure, privileged backgrounds / disabled people who are disadvantaged in multiple ways besides disabilities.

For the most part I come from security and privilege.

Do these fault lines look familiar? Am I missing any? Where do you sit? I’d love to read your comments!

What Was Pope Francis Doing?

Pope Francis washes the feet of disabled people as part of Easter celebrations

Delia Gallagher, CNN - April 17, 2014

"Those chosen for the special honor included a 16-year-old boy from Cape Verde who was paralyzed in a diving accident last year, a 19-year-old man and a 39-year-old woman diagnosed with cerebral palsy, and two 86-year-olds with mobility problems.”

I know that the sensible, non-obsessive thing to do in situations like this is to compartmentalize and appreciate. Compartmentalize that it’s nice for the Pope to make such a gesture to a group of lowly and disadvantaged people, and set aside the question of why people with these disabilities are housed in a “home for the elderly and disabled”, and not living at home, with their families, or on their own if they choose? And then just appreciate the act of compassion … or is it respect?

Then there is the theological meaning, which is probably more important, but which I am not qualified to say much about. From what I have read, this Pope has often used the foot-washing ritual to buck high-church tradition and show love and respect for socially stigmatized people … like pregnant women in maternity homes, youth in drug rehabilitation, and AIDS patients. In which case choosing to focus on disabled people is significant, possibly a unique way of highlighting and de-stigmatizing them.

This would be a significant if subtle break from another Church tradition of a compassion towards disabled people that tended to further stigmatize and condescend. Think Mother Teresa, whose order wouldn’t install elevators required by local codes in their orphanages because they considered them, a luxury. They would carry disabled patients up and down flights of stairs. For them, the symbolic sacrifice of the giver was the whole point, and the recipients of their acts were little more than bit players in their interpretation of compassion. It’s the classic misunderstanding of compassion as something primarily for the giver, in which the receiver is nothing but an inert vessel.

That’s what I worried was going on with Pope Francis’ foot-washing. It still looks a little bit like that to me, though ultimately I don’t sense that Pope Francis thinks this way. I appreciate the idea of the highest Catholic Priest serving rather than being served.

Wouldn’t it be interesting, though, if one of those disabled people had reciprocated, and washed the Pope’s feet? Or, washed one another’s feet? Not to reinforce the perception that disabled people are humble or subservient, but to underscore that we can be givers as well as receivers.

Best Explanation Of Autism

What Is Autism?

Nick Walker, Neurocosmopolitanism - March 1, 2014

Since I am neither autistic myself, nor educated on all of the various views and facts about autism, I call this the “Best” only in the sense that Walker’s piece is the explanation of autism that is the most consistent with my general sense of what autism might be, and which I believe helps to answer some of the lingering questions I have about autism … questions that I rarely see addressed by advocates of the “neurodiversity” movement. Above all, it goes a long way towards answering one question:

What do autistic people experience that is different from non-autistics?

Walker writes:

“ … the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.”

Of course, I can't say from experience whether this is correct. However, it is a direct, coherent, grounded answer to the question, and it sounds like a very plausible explanation for the various things that autistic people do that are different from what most non-autistic people do. Autistic “behavior” is a rational response to a significantly different sensory experience. That is far less sinister and mysterious-sounding thing how autism is described by even well-meaning autism “experts”. It also suggests that autism really is like other disabilities, which involve doing things differently in order to adapt to different physical or mental input or settings. When you are disabled, it is irrational and maladjusted to NOT do things differently. It seems like the same can be said of autism.

Do read the whole explanation. I have yet to see a better one.

Necessary But Not Sufficient

I heard a phrase the other day that struck a chord with me, that I think can help us deal with the idea behind that infamous Scott Hamilton quote:

“The only disability in life is a bad attitude.”

The phrase I heard was, “… necessary, but not sufficient.”

I think this more properly expresses the role of mental attitude for disabled people. Having a positive, optimistic attitude is probably necessary for achieving independence, happiness, or whatever is your definition of success. But attitude alone isn’t enough to overcome the real barriers we encounter. A positive attitude may be necessary, but it is not, by itself, sufficient.

Now, what constitutes a “positive attitude”? That is another question entirely.

"Not The Fun Kind"

From the Demonically Disabled Tumblr blog.

I’m going to break my own rule and add something to this photo. It starts with a comment on the photo from the blogger / selfie-taker herself:

"I never ever ever ever ever ever want to walk again. That was hell. And not the fun kind.”

I am aware that for some people, the notion of disabled people NOT wishing to be less disabled … of wheelchair users NOT working their asses off to walk again someday … is quite controversial. I dare say for quite a few people it sounds utterly irrational, either “crazy” or some sort of contrarian stance. Well, for some of us it is somewhat philosophical. But for others, it is completely practical; doing things the “normal” way hurts, and is just less practical, than embracing tools and adaptations. I walk, it works for me and my everyday needs, and I am glad for all the surgery and physical therapy in my early years that made that possible. But, I used a mobility scooter when I was in college, and when I have to travel through an airport, gimme that wheelchair man.

Rookie Mistakes

Or … advice for people just starting to have disability conversations.

This is similar to, but not the same as, disability etiquette or "Advice for the Non-Disabled". Those kinds of things address everyday social interaction and practical accommodation. This list is specifically for people who want to discuss disability issues, culture, and philosophy. It goes without saying but I'll say it anyway ... it is for people of good will, who want to have real conversations and want to avoid hurting people as much as possible. It isn't for people who consciously or unconsciously want to score points or impress people with how smart, compassionate, or "with it" they are. Also, it’s not just for non-disabled people. Plenty of people with disabilities are just dipping their toes in the water of disability as a topic of study or discussion. Real-life experience counts for a lot, but it alone doesn’t immunize against foot-in-mouth disease.

Finally, I call the items on the list "Rookie Mistakes" because they are things that people often say and do when they are new to disability-related discussions, and they are largely mistakes ... that is, unintentionally hurtful or annoying.

Enough preamble ... here's we go:

"People First” Language

Say “people with disabilities” or “person with a disability” in most formal, business or academic settings. However, be aware that quite a few people with disabilities don’t like “people first” language, and prefer to call themselves “disabled” or a “disabled person”. There are reasons for this, having to do with whether you see disability as part of who you are or as a separate characteristic, but it’s not really important to sort that out right away. Just stay away from “handicapped”, and above all, don’t use terms like “differently abled”, “handi-capable”, or any other phrasings that sound like they are trying very hard to make disabled people feel better about themselves. A few of us like this, but most of us find such terms to be kind of ridiculous and patronizing.

Practice Humility

Don't place your academic knowledge of disability ... learned in a class or seminar ... over a disabled person's lived experience. You can talk about your different view, or tell them what you have been taught. You don't have to agree with the other person. Just be respectful of the fact that you took a class, while the disabled person lives it every day. Beware of this especially if you start feeling angry that the disabled person you are talking to is "wrong" or "stupid". If you start feeling that way, it's time to step back and ask yourself who is the real expert.

Don’t Minimize Disability

In general, people with disabilities aren't comforted by thoughts and sayings that minimize the importance of disabilities. "I don't even think of you as disabled" and "We all have SOME kind of disability" are generally not helpful or kind things to say. They are the kind of things that can seem to be very insightful and empowering, but for the most part, will not be taken that way. Disabilities are real and have significant daily consequences. A better way to make us feel better or more understood is to acknowledge our difficulties once in awhile. Don’r pretend that they make no difference.

“Not Your Inspiration”

Don’t call disabled people “inspirational”. Just don’t. It doesn’t matter why you feel that way or what your good intentions are, it is something we have heard so often, and so often inappropriately, that it’s like fingernails on a chalkboard to us. I know fellow disabled people who are cheerful and optimistic every day, week in and week out, and even they want to vomit when someone says they or another disabled person is “inspirational”. You can probably express the positive feelings by simply picking a different word. Here are some suggestions that are less annoying, and in some cases more specific and accurate with particular people and situations:

Awesome

Role Model

Amazing

Badass

Cool

Eye-Opening

Thought-Provoking

Astonishing

Admirable

Hilarious

Honorable

Tough

Different Kinds Of Experience

There are all kinds of ways to “experience” disability. All of them have value and provide some insight. However, they are not all the same. Parenting a disabled child is not the same as being a disabled child. Working in a disability-related job is not the same as living with a disability. Walking with crutches for several weeks because of a broken leg can make you more aware of accessibility, but it isn’t the same as having to cope with barriers every day of your life. Participating in a “wheelchair for a day” event may actually mislead you into thinking that using a wheelchair is worse than it actually is, since you’re only doing it for a few hours, while most wheelchair users get good at it over a long time. The point here is to be careful about how you empathize with a disabled person, and don’t claim a different kind of connection than you actually have.

Under The Bus

Remember the old “Seinfeld” bit? “I’m not gay! … Not that there’s anything wrong with that!” There’s a similar kind of thing that happens in the disability community, where one group of disabled people try to explain themselves and escape stigma by back-handedly disparaging people with other kinds of disabilities and worsening their stigma. Probably the most common example is physically disabled people very strongly asserting that they are not mentally impaired. They do this because so often people do assume, say, that a wheelchair user is also cognitively disabled, or that someone who has impaired speech is not intelligent. The problem is that in denying that we are like THOSE PEOPLE, we imply that there’s something awful about THOSE PEOPLE. Non-disabled people have their own version of this, where they imply that rights and freedoms are fine and appropriate for one group of disabled people, but NOT for others. For instance, some educators might agree that segregated classes are terrible for a “smart” kid in a wheelchair, but that kids with Down Syndrome, Autism, or Attention Deficit Disorder really need to be in separate, “special” classes. Every person has unique needs, and one size does not fit all, but beware of those who defend hurtful, dehumanizing practices for certain types of people and not for others.

One final point I’d like to make about these “Rookie Mistakes”, is that because they are mistakes typically made by disability “newbies”, I believe we should go a bit easy on them. We can point out to them where they’ve gone wrong, but try not to unleash hell on them because they aren’t yet tuned into our somewhat specialized traditions and taboos.

What do you all think? I’m especially interested in hearing from “veteran” disability activists and thinkers. Are there other “Rookie Mistakes” that are forgivable but need correction?

What's In The Ableist Agenda?

I decided, for dark amusement, to try and channel what ableist people actually think about disabled people and the disability community. More specifically, I tried to figure out what’s the “Ableist Agenda”, if there is one. Here’s some things I came up with. Feel free to add more in the comments. Remember please, these aren't my beliefs, it's me trying to say what I think ablest believe:

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There’s a whole bunch of people nowadays saying they are “disabled”, who really aren’t. They’re either lazy and knowingly trying to get money for nothing and special privileges, or they’re messed up in the head and have convinced themselves they’re disabled because somehow it makes them feel better or feel special or something.

All sorts of weaknesses and moral failings are now considered disabilities. When I was in school, kids who misbehaved were punished, not given an SSI check and put in Special Ed. It’s disgusting!

The other thing disabled people do these days is try to convince everyone that there’s nothing actually wrong with them … that their defects are just “differences”, like skin color. Some of them don’t even really want to get better, which is crazy, right?

They say they want to ban all institutions, but look what happened when we let all the crazy people out of the insane asylums. We got all these homeless people pushing people in front of trains! Even if they don’t do anything bad, what are these poor retarded people going to do, move back in with their elderly parents? End up on the street, taken advantage of?

I know some really sweet, admirable disabled people. But lots of the disabled people I meet are crabby, bitter, and demanding. Nothing’s ever good enough for them, and if everything isn’t perfect, they’re calling a lawyer.

Disabled people have too many special perks and privileges. Maybe at one time it wasn’t such a big deal, but now things have gone too far and they’re crowding out everyone else and getting in everyone’s way. And still nothing’s good enough for them!

It's a hard thing to say, but for some of these really badly disabled people, it's just not worth all the money we spend on them. And it would be better for them, even, if they just died naturally. I mean, who wants to live like that anyway?

I’m all for more accessibility, and I’m sure some good disabled people are discriminated against for jobs, but laws like the ADA are just open invitation for ambulance chasers. It’s a feel-good law that doesn’t do any good, just causes a lot of mischief.

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What’s interesting is that these are more a bunch of complaints than a policy agenda. One of the side effects of being ableist is that people who are ableist usually don’t know anything about how disability policy works, so they don’t really have a coherent list of actual things they would change. Maybe that’s a blessing.

Of course, there’s a pretty coherent agenda against poor people, a group we overlap with quite a lot. Maybe that’s a separate discussion.

Mostly, ableism seems like an offshoot of the “You kids get offa my lawn!” / “This country’s going down the tubes!” strain of conservative thinking. To misapply Lionel Trilling, ableism today seems to be mostly a set of “irritable mental gestures that seek to resemble ideas”.

Our Religion And Our Science ...

"My religion can never be science. This is the difference between navigating the world and explaining it.” -- Ta-Nehisi Coates, The Atlantic - January 31, 2014

It’s risky to take insightful words meant for one discussion and apply them to another. I’m going to do that now, though, because when I read the lines above in an article by Ta-Nehisi Coates about different ways that African-Americans process their history, culture, and politics, it nearly broke my brain because it seemed completely applicable to a basic duality for the disability community.

What’s our duality?

On the one hand, there are things we as people with disabilities can do, and ways that we can behave, that can help us navigate this world successfully. We can educate ourselves, master our disabilities as best we can, plan the accommodations we need so its easier on everyone else, dress well, and practice ignoring the stares and always smiling. These things will help, and not doing them usually makes life harder for us.

On the other hand, the problems we face aren’t primarily because of things we fail to do or how we act. “Putting our best foot forward” doesn't remove the fundamental barriers that confront us. They exist independently of us. The world isn’t designed for people like us, and it’s getting better only very slowly. Being polite doesn’t cause ramps to materialize. Education does’t guarantee a job or even a decent shot at one. Smiling in the face of prejudice is often impotent, or worse, complicit. People have misguided and even hostile impressions of disabled people that they’ve learned on their own, whether they’ve met lots of disabled people or not. The roots of ableism are very, very old, lodged still deep in the lizard brain.

Which is why the quote rocked me so hard. I believe two contradictory things with equal conviction:

1. Every disabled person has available to them tools and strategies for making their lives better, and we are individually responsible for locating and using those tools to the best of our ability. If we aren't sure what those tools are, or where to find them, there are a lot of us around who are willing to help each other. I believe this to be true.

and

2. The most significant barriers we face aren’t of our own making, and nothing that we do individually is going to shift them an inch. There is hope for change if we work together, but it won’t always be fun, it won’t be easy, and it will sometimes make people uncomfortable. But if we don’t engage and try, then the only successes we’ll see for disabled people will be the kind of anomalies and one-off lucky breaks that get featured on slow news days. And thank God for them! They remind us of what success can look like, and chip away at non-disabled peoples’ preconceptions. It’s just that there are hard realities and quantitative facts at play that individual moral fortitude alone isn't going to change. I believe this, too.

The first is about self-help, and you could say it’s our religion. It’s a faith that if we try to be the best people we can be, we will see some reward. Also like religion, we commit to it for it’s own sake, even when we can see that it makes little difference to objective reality. 

The second is the objective reality that resists attitude, pluck, and even hard work, but can be analyzed, mapped out, and understood. And if understood, changed or at least shifted with smart, thoughtful collective action.

“My religion can never bee science. This is the difference between navigating the world and explaining it.”

It has never been clearer to me that we need both in the disability community, and that we need to evaluate each effort differently, by different criteria, because they have different, though complimentary goals. It's why Centers for Independent Living do both services and advocacy.

For what it’s worth, it feels good to be able to think about it this way.

Being A Lesson To Others

We're not here for your inspiration

Stella Young, Australian Broadcasting Corporation - July 3, 2012

(Via the too brain fogged for this Tumblr blog).

I just re-read this great piece by Australian journalist and disability activist Stella Young, and I think I have an alternative theory of "Inspiration Porn”. It’s not a replacement, It's more lie an addendum.

I agree with Stella that pictures of ordinary disabled people doing ordinary things, with blandly uplifting captions attached, mainly serve to tell non-disabled people, "You think your life is hard, it could always be worse!" They are also meant to encourage non-disabled people who are discouraged for other difficulties in life. If a paraplegic live life with a smile, than your problems shouldn't be too hard to handle.

However, I think these photos ... and videos, too ... serve another purpose. I think that "Inspiration Porn" has become another ideological weapon for a group of people with a strong conviction that today's society is decadent and lazy. Instead of uplifting people (whether we agree that they should or not), "Inspiration Porn" is now just as often used to shame people perceived to be weak, lazy, or entitled ... people perceived to have had it too easy, who are now unable to face adversity. Disabled people who show minimal levels of functionality or better are object examples of how people should face adversity ... with determination, ingenuity, and toughness.

This is another reason I dislike "Inspiration Porn." I think that the "world is going to hell / kids these days" constituency is dead wrong and harmful to boot. Society has plenty of ills, and it's easy to find people who think the world owes them a living. But, that's always been the case. I especially think that the so-called "Millennials" have been getting a bad rap. So, when "inspirational" photos and videos of disabled people are used to make others feel bad about themselves, in the words of Stella Young, it "really burns my crumpets".

Why "Special Needs"?

I have another question for parents of children with disabilities. I hope this question isn’t either too controversial or too ignorant, but here it goes. Why do blogs by parents of what I would term "kids with disabilities" use the term “special needs” instead of variations on disability?

Is it because disability sounds too negative? Is it because schools now widely use the term “special needs”. Does it reflect a more complex re-conceptualizing of “disability” as just another form of human variation? Or, is there some reason for it that I might be totally unaware of?

I ask because as an adult, I use variations on the word “disability” to describe my physical impairments, which I have had since birth. When I’m being very specific and scientific, I might use “impairments”. When I’m feeling punchy or shooting the sh*t with other disabled people, I might even say “cripple”. I know of many adults with disabilities who take care to use person-first language … and others who don’t like person-first language at all. I also know of many disabled adults who prefer “differently-abled”, or some other self-consciously positive terms. They’re not my cup of tea, but lots of disabled people like it. However, I can’t imagine myself, or remember any other disabled adults using “special needs” to describe their own disabilities. Like, never. I’ve only ever heard the term used by family members to describe disabilities of someone in the family … or doctors, teachers, or other professionals to describe patients, students, or customers, and mostly just children, rarely adults.

So, maybe I have a second, related question for parents. If you use “special needs” for your child, do you think your child will use the term to describe his or her situation when he or she grows up? Or, do you think they might switch to disability, as they mature and have the emotional tools to develop their own positive, and realistic self-concept?

Obviously, I’ve tipped my hand here. I don’t really understand or relate to the term “special needs”. The thing is, I don’t despise it the way I do some other disability euphemisms, and I don’t really have a strong argument for what might be wrong with “special needs”. I guess I’m saying that I am open to persuasion, and would like to hear if there is a thought-out philosophy behind it.

What's The Deal With Autism Speaks?

YEEES

Reblog by Sunshine, been keeping me up for days - November 14, 2013

This is the best collection of reputable links that explain why many people are upset with the well-known autism charity, Autism Speaks … that’s the organization whose logo is a blue puzzle piece. I particularly recommend the letter by John Elder Robison, in which he resigns from the Board of Directors of Autism Speaks. Criticism of the organization is particularly intense right now, because Autism Speaks is hosting a conference and Washington, DC lobbying effort this week.

I am not autistic. I don’t have children or other relatives who are autistic (that I know of). So why am I interested in this?

I think it’s important for as many people as possible to know that the nation’s most recognized autism charity has a very particular point of view that a great many people don’t agree with. It isn’t uncontroversial. You can support it’s goals and tactics if you agree with them, but don’t assume that because it’s about autism, and they have charity walks and things, that it must be good.

I think it’s important to hold all disability charities and organizations to a rigorous standard of conduct, and ask whether its goals and tactics are close enough to your views to support it.

I think that the debates between different understandings of autism provide important insight into the different ways all disabilities are experienced and understood.

Plenty of people without autism or a direct connection to autistic people support Autism Speaks. So, I don’t think it’s any more presumptuous for me to oppose Autism Speaks, or support an alternative autism organization I like better.

There IS at least one autism organization that I believe represents a better alternative to Autism Speaks … The Autistic Self Advocacy Network.

The resignation letter is beautifully written. It is also strong without being rancorous. Despite my lack of personal connection to autism, the letter moved me, particularly as a person with disabilities.

Awakening

Is this college application season?

I was just thinking about when I was applying to colleges. If I’m right about the timing, it would have been the fall of 1984 that I spent sorting through the application packages of the 5 colleges I chose to apply to, and working on those application essays. I really wish I still had copies of those application essays, but I don’t. I do remember that somewhere in the essay portion of each application, I talked about my disability.

My recollection is that I described my disabilities with only a moderate amount of detail. I then made some kind of statement that even though I had disabilities, I emphatically didn’t want to pursue any kind of career or even interest in disabilities in general. Essentially, I made as passionate a case as I could for avoiding becoming part of any sort of disability community. At that time, in my head, it seemed like an honorable, even heroic stance. And for what it’s worth, I got 4 college acceptances, including my first choice, so I guess nobody saw my writing about this and said “Yuck!”. Nobody in my high school years ever introduced me to another way of thinking about disability. I didn’t know anyone else with a disability. The only images and ideas about disability I was exposed to were either intensely medical … which bored me, and pitiable ... which of course I wanted no part of.

It wasn’t until the Gallaudet University student protests for a Deaf President, which took place during my Junior year in college, that I first started to absorb the idea of disability as a social issue, something like race and gender. That’s also when I first saw or heard of disabled people being bad-ass as disabled people, not as people overcoming or masking their disability. So really, what started to turn me around wasn’t any particular person or role model, and it didn’t come from an intentional process of education or persuasion … it happened because an event happened that had nothing to do with me directly, but which I felt connected to in a way that surprised me.

I wonder if this is still a common progression for young people with disabilities? Or, are there more opportunities now for youth with disabilities to learn about disability from different perspectives, and have earlier “awakenings” to their disability identities?

The "Social Model" In Action

There's something I should have added yesterday when I was talking about how sliding backwards on accessibility in a business can affect both employees and customers.

The "Social Model" of disability says that people who have disabilities are more harmed and hampered by discrimination and physical barriers in the community than by their actual bodily impairments. This is a pretty widely-accepted concept among people with disabilities and others, especially those who are activists or who have studied and thought deeply about disability issues. Although you don't often hear it outright, I suspect that many people who hear about the Social Model of Disability find it hard to swallow. Maybe they look at their own impairments, or those of friends and family, and feel it's just going too far into abstract theory to say that being paralyzed is fine, while the real problem is lack of curb cuts.

Put exactly that way, I agree that this sounds just a bit off.

The thing is that certain situations prove in a very concrete, very non-theoretical way why the Social Model makes sense. A supermarket cashier who uses a wheelchair and has a wheelchair-accessible work area is, in the practical sense, less disabled. She can physically do the job, and she can earn her own living. If her work area is made inaccessible … a counter made too high, a desk made too low, wheelchair maneuvering space narrowed or blocked … then she is, in fact, more disabled than she was before, even though her physical impairments haven't changed.

When a promising young person has a car accident resulting in a permanent disability, it's big news in a community, a story that makes people feel sorry and sympathetic. When a disabled worker is carelessly squeezed out because of poorly planned, entirely preventable physical changes in a workplace, the affects are, in a very real way, the same. Those are the times when the Social Model of Disability is proved correct and most relevant.

Followup: From An Old Familiar Place

I thought of a couple of things late last night, after I reblogged and commented on that account of how a young woman with Cerebral Palsy was treated by an ER nurse.

The story made me instantly angry in a way that very few things do. I shared it because of that, and because I think it's important to remember that sometimes, things really are as bad as we say they are … that while being a chronic misanthrope isn't healthy, it isn't always entirely wrong.

What I only thought of later is that this was a somewhat rare case when a person's fundamental ableism was in the raw, explicitly stated. In a way, that's a good thing. Usually, we don't actually hear people say we're not a "real person". Instead it's a tone of voice, a look, a reticence. In medical situations, it often manifests in a subtle disconnect. They ask us questions and we answer, and their responses and followups suggest that our answers were not accepted at face value. From there, it progresses to where every conversation with a doctor or nurse has a subtext … like they think something about us that they're not saying out loud. And of course, we feel paranoid for thinking that. It can be a real mess.

One other thought. What the nurse said seems very extreme, something probably very, very few people believe. It's one thing to be uncomfortable around people with disabilities, or have no patience for our "special needs", but it's quite another to assert that we are not "real" human beings in some fundamental way. But we can't forget that not so very long ago, the idea that people with certain types and degrees of disability didn't deserve the same basic rights as other humans was a mostly accepted and acceptable point of view. And it turned out to be a horribly short walk from abstract philosophical theorizing about genetic "contamination" and "humane" ways of "reliving suffering" to the Nazi T4 program, carried out mainly by medical professionals in what was at the time one of the Western World's most highly educated and "cultured" countries.

It's quite possible that nurse has problems and crises in her life that led to her outburst. But the nature of her outburst was pretty specific, and came from a familiar pool of ideology. The horror isn't that she said those words on a particular day to a particular person, it's that the ideas behind those words still have currency for who knows how many people.