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!

Tyrion Remembers Orson

I want to talk about a scene in this week’s “Game Of Thrones”, in which Tyrion Lannister, a “dwarf” sometimes known as “The Imp”, and his brother Jaime talk about their long ago cousin, Orson, who was “simple”, a “moron”:

I can't embed the video, but click here to watch the whole scene.

Tyrion: Do you remember cousin Orson? Orson Lannister?

Jaime: Of course! Wet nurse dropped him on his head, left him simple.

Tyrion: Simple?! Used to sit all day in the garden crushing beetles with a rock … “Kung, kung, kung, kung …”

Jaime: Kung, kung, kung!

Tyrion: Nothing made him happier.

Jaime: Nothing made you happier. You’d think being tormented from birth would give you some affinity for the afflicted.

Tyrion On the contrary! Laughing at another person’s misery is the only thing that made me feel like everyone else.

Wow. That line hit home.

Ideally, the common experience of disability would mean that people with disabilities all understand each other and treat each other with extra care, but the lure of acceptance is strong. In childhood and youth, especially, (but not only), there are rewards for pissing a little on people perceived to be less capable, less “normal" than you are, especially when you aren’t anything like “normal” yourself. I was certainly no model of disability solidarity in my youth, and I’ve failed at it more than once as an adult, too.

Tyrion goes on to explain how and why he spent so much time with Orson, trying to figure out why he sat squashing beetles all day, every day:

Tyrion: So, I went to Maester Valeric’s library. Turns out, far too much has been written about great men, and not nearly enough about morons. Doesn’t seem right!

There’s a lot more said in this monologue, and lots of meaning behind it, most of which has nothing to do with Orson’s or Tyrion’s disabilities. Of course, I was engrossed by the disability stuff itself, how Tyrion’s language is dismissive and cruel, yet at the same time showing clear evidence of a much deeper understanding and caring on his part for Orson. He may not have had quite the empathy we’d like to see, but he had curiosity, and seemed to approach Orson without biases. All jokes aside, Tyrion saw Orson as a person he wanted very much to understand … a sentiment I doubt anyone else in the Lannister clan shared.

Tyrion: And as I watched, I became more and more sure of it. There was something happening there. His face was like a page of a book written in a language I didn’t understand, but he wasn’t mindless, he had his reasons.

It seems like he isn’t saying much here, but really it’s fundamental, and it’s a bolder statement about the real depth and personhood of people with disabilities than even some close relatives and experts in the real world can manage. Tyrion suggests that it’s not that Orson was senseless, it’s that Tyrion had never been able to decode sense in him. In the context of the show, he’s saying the same about the world he lives in, which appears to be senselessly cruel … and may be in fact … but he, Tyrion believes that on some level it must make sense, if only he can figure it out.

I only hope he lives long enough.

The whole conversation stunned me, because it was so unexpected. I am even more curious now whether the author, George R. R. Martin, has specific reasons why he has made different disabilities such important elements in his stories.

Addendum:

I should have mentioned for the uninitiated that Jaime, too, is newly disabled, having had his right hand chopped off while in captivity. This is a pretty big issue for him since his main identity and "claim to fame" in the "Game Of Thrones" world was as possibly the best swordsman in Westeros. So in this scene, we have two brothers, each with a different disability, discussing a cousin who had yet a third different kind of disability. And arguably, they're not even really talking about disability. You just don't see that happening on any other TV show, or even many movies.

More On Institutions

Uncertain Future at Institutions for Disabled Texans

Alexa Ura and Corrie MacLaggan, The Texas Tribune - June 3, 2014

There’s one thing that I’m sure is a factor in the ongoing debate over institutionalization and other more “sheltered” service models. People become personally invested in justifying positions that make their own choices look better. Parents of disabled children who have chosen institutionalization may have some good reasons for concern about the move away from large institutions, but I’m sure it’s also hard to hear again and again how fundamentally wrong the the entire approach is … the approach they at some point chose for their son or daughter, thinking (and hoping) it was the best. It’s hard enough to admit you have been wrong about something for years. It’s got to be especially awful to digest the possibility that a choice like this might have been tragically, horrifically wrong.

I’m not sure there’s an equivalent motivation on the other side. Yes, those of us who favor the end of institutions and segregated services feel personally about it. Some of us have been in such programs ourselves, and broader approval of our choice to leave bolsters our confidence that we made the right decision. Those of us who are disabled but have never been in more restrictive programs see others like us living such radically different lives, and we personally fear that we could end up there at any time, unless such places are phased out and closed for all time. I don’t think the self-justification motive is as strong with us, though, than it is for the pro-institutional “side”.

The other problem is that it's almost impossible in traditional journalism to deal with the more complex reasons why otherwise reasonable individuals support models that most people, on some level, feel are at best grossly out of date, and at worst cruel and corrupt.

In case you missed them, check out some other recent posts about institutionalization:

How Could We Have Thought It Was Okay? - May 24, 2014

Institutionalization Followup - May 25, 2014

The AV Club Looks At Intellectual Disability Portrayals

Simple Jacks (and Janes): 17 mostly awful portrayals of people with intellectual disabilities

Josh Modell, The AV Club - June 2, 2014

Here’s another welcomed, decent exploration of a disability issue by a “mainstream” publication.

The default position of most pop culture consumers seems to be that movie and TV portrayals of people with intellectual disabilities are by definition profound and heartwarming. There’s a sense that as long as intellectual disability stories aren’t obviously mean-spirited, we sort of have to love them. To quibble or critique is to come off as heartless and insulting. So, this article starts out with a lot of credit simply by acknowledging that such portrayals can actually be both well-intentioned and “awful”.

Writer Josh Modell rightly faults the apparently cynical trend among aspiring actors to take on intellectual disability roles in hopes of scoring acting awards, as if playing intellectually disabled people can’t help but reveal true acting brilliance. In fact, it tends to come off more as stunt acting … a set of formulaic tricks that display actors' knowledge of the tricks, rather than their depth of acting talent. I think that the key to portraying people with disabilities is the same as portraying anyone else … character depth and development. In a few examples, Modell also points to how frequently details are simply unrealistic, like Sean Penn’s “Sam” in “I Am Sam”, who in real life would have at least a few difficulties raising a little girl, but in the movie all of those troubles are depicted as nitpicks from mean bureaucrats. In fact, I think Modell kind of misses the boat on how often intellectual disability film plots rely on straw-man opposition that feels familiar, but is almost never as evil and unwarranted in real life.

The most interesting thing in this article, though, is that Modell seems to be engaged in a kind of dog-chasing-his-tail exercise about the difference between insulting stereotypes and realistic portrayals. An intellectually disabled character talking loud and having “specific obsessions” can certainly be overdone. On the other hand, intellectually disabled people often do both of these things, and sometimes it’s the first thing you notice about them. When it is overdone and that’s all there is to the portrayal, it is insulting. But if they are surface traits that lead to deeper understanding later on, then they aren’t necessarily offensive … unless we think those behaviors themselves are totally unacceptable, which would in itself be insulting and ableist. I think this sends Modell off the rails a bit regarding “The Other Sister”. True, most critics and discerning viewers hate this film for supposedly being over-the-top, but Juliet Lewis and Giovanni Ribisi’s scenery-chewing didn’t bother me that much precisely because their behavior and demeanor felt real to me, and not one-dimensional. Some people are, in fact, uninhibited and extroverted, and there are very real, important stakes involved here that fully justify the characters’ outsized emotions.

I wish the article explored this dilemma a bit more, though there are hints to a solution. Modell notes at least one occasion when intellectually disabled supporting characters were portrayed by intellectually disabled actors … much more effectively than the supposed star.

There are several of these movies I haven’t seen, and am very curious about now, especially “Tim” (Mel Gibson) and “Profoundly Normal” (Kirstie Alley). What I would really love to see is a followup article identifying some “good” intellectual disability portrayals. By leaving out “Forrest Gump” and “Rain Man”, does Modell mean to imply that he likes them … that they aren’t overdone or insulting? They’re not terrible, but I think a lot of his criticisms could be applied to these films, as well.

Still, quibbles aside, it’s good to see wide-audience pop culture websites take on disability issues. More of this, please!

Did You "Miss This In History Class"?

Deaf President Now

Stuff You Missed In History Class Podcast - May 28, 2014

Hosts Tracy V. Wilson and Holly Frey do a really good job explaining the “Deaf President Now” movement at Gallaudet University in 1989 to an audience that is probably mostly unaware of it. I especially appreciated their focus on the ideological divide between different approaches to communication for the Deaf … between those who emphasize speaking and lip-reading, and those who assert the importance of Sign Language. I was also impressed at the episode’s introduction, in which the hosts talk about being hesitant to cover disability history topics because they don’t want to perpetuate syrupy hero-worship that back-handedly implies low expectations and “otherizing” of disabled people. This might be a concern they have learned from others, but it sounded like the idea came naturally to them, which is nice to hear.

I left a comment suggesting that they do an episode on the 1977 504 Protests, another empowering moment in disability history. Shows and podcasts like this need more encouragement to take on disability topics now and then.

Weekly Wrap-Up

Sunday, May 25, 2014

• Institutionalization Followup

Monday, May 26, 2014

• Memorial Day Post

Tuesday, May 27, 2014

• Questions About Employment Discrimination

Wednesday, May 28

• Views from an Adult With Disabilities (In collaboration with Brielle & Me)
• Criptiques Podcast 2

Thursday, May 29, 2014

• Awareness
• Job Discrimination: Still Looking For Feedback

Friday, May 30, 2014

• Views from an Adult With Disabilities … Followup
• Best Article On Disability By A Parent

Saturday, May 31, 2014

• Photo Of The Day … And A Disability Role Model

Photo Of The Day ... And A Disability Role Model

The Crippled Suffragette: Rosa May Billinghurst

Bisexualfandom - May 27, 2014

(Via the Just Rollin On Tumblr blog).

"Billinghurst’s ‘invalid tricycle’ gave her the mobility she needed to become an active member of the suffrage movement. Her ‘invalid tricycle’ was a makeshift wheelchair consisting of a modified tricycle with hand controls. Billinghurst attracted public attention by appearing in processions dressed in white and wheeling along with her machine decked out in colored WSPU ribbons and “Votes for Women” banners. Billinghurst rose to prominence as a recognizable public figure and became known as “the cripple suffragette.”"

Why oh why have I not heard of this woman before!

Best Article On Disability By A Parent

For Hire: Dedicated Young Man With Down Syndrome ... A Father Reflects On His Son’s Search For Employment

Michael Bérubé, Al Jazeera America - May 25, 2014

(Via the Autistic Self Advocacy Network Tumblr blog).

This is the best first-person article on disability by a parent of a disabled child I have ever read. It is very personal and anecdotal, but also connects one young man’s experiences with larger policy issues. Mr. Bérubé keeps the article focused on his son, Jamie, while also expressing how he, Jamie's father feels.

The picture he paints isn’t entirely gloomy. Age 21 isn’t quite the “cliff” it is sometimes said to be for disabled kids. There are systems in place with decent and improving philosophies behind them. Yet, so many disabilities … especially it seems intellectual disabilities … seem still to still baffle us, probably unnecessarily.

This is personal journalism at its best.

Views from an Adult With Disabilities … Followup

Towards the end of my collaborative blog post with Kerith Stull of “Brielle and Me”, on advice for parents of kids with disabilities, Kerith notes that I didn’t say anything about, “therapy, IEPs, or equipment” – things we parents focus so much energy on in those early years.” A point well taken … and worthy of a followup!

I think I just figured that these were givens. As disability activist and artist Cheryl Green pointed out in a recent podcast, people are usually introduced to disability through the medical field. So, if anything, I worry that parents will see their children’s disabilities exclusively through the lens of medicine and rehabilitation, especially in the preschool years. Later on, parents learn more about some disabilities through the similar and parallel educational system, which can also come to dominate how they understand disability.

I certainly benefitted from my parents' pursuit of medical “corrections” that they hoped would give me more mobility and physical independence down the line. In my early years they committed me to fairly aggressive surgery and physical therapy. I did start walking when I was 3 years old, and both surgery and therapy tapered off a bit, replaced by less extensive ongoing PT and foot and ankle braces. I think I stopped having any formal physical therapy when I was around 13 years old.

I don’t know when or how my parents decided it was time to stop fixing me. Maybe they never really made a decision at all. Maybe my doctors just ran out of reasonable things they could do, and told my parents they were pretty much done. I don’t know what they would have done had my disabilities been different or more severe, but I suspect that they would never have let therapies, services, and gadgets dominate our family. They just weren’t like that.

One thing I am very grateful for is that my parents never let me think that I had to “work hard” and suffer through more and more hardships in order to achieve their goals for me. I know so many disabled adults who decades after their childhoods have simmering resentments and complicated relationships family because they got the message … intentionally or not … that they had to work harder, always harder, and that if they didn’t, they were giving up. Guilt trips happen in the nicest families, and disability is a fertile ground for them. My therapy was hard and painful, but I never felt that success or failure had anything to do we my character.

Maybe that’s an extra piece of advice for parents. Don’t let your child confuse therapy and rehabilitation “success” with their self-worth. No abstract performance goal is worth it if your child ends up feeling judged and persecuted by his or her own family.

Job Discrimination: Still Looking For Feedback

I haven’t had any responses yet to my questions about employment discrimination. There are three reasons I am asking for feedback on this:

1. I am helping my local Center for Independent Living develop some classes for disabled people looking for work, and one of the topics we want to deal with is disability-based employment discrimination.

2. I am looking for work myself, and in my previous work experience, disability was actually a plus, not a problem. So I am personally curious about what real-life disability discrimination looks like in the job-seeking arena.

3. I think we in the disability community mention job discrimination a lot, often without being specific about it. It is annoying when non-disabled people say, “But what about the ADA? Isn’t it against the law for employers to discriminate?” It’s annoying because it sounds naive, but the question remains, how and why does disability discrimination still operate, and is there any practical, immediate way to combat it?

So please, dive in! Any comments on these and related questions would be helpful.

Awareness

In the second Criptiques Podcast, guest Cheryl Green hilariously dismantles a staple of the disability community … “raising awareness”. She rightly skewers the ill-defined goals and bizarre stunts people think up in the name of promoting “disability awareness”.

I think that a lot of disabled people, themselves, rally around "raising awareness" because "awareness" to them means an ideal situation in which they wouldn't have to explain their disabilities to people anymore. When we someday achieve the desired state of “disability awareness”, people will just know what's up with our disabilities, and will correctly anticipate our needs. More importantly, they won’t misunderstand us anymore. They won’t assume we are drunk, drugged, mentally impaired, sad, incompetent, narrow, self-centered, awkward, boring, unpredictable, angry, bitter, or angelic anymore … just because we bear markers of some disability or other.

One problem with this is that it's impossible for everyone to become fully aware of every disability. At best, we might hope for broad understanding of a few basic concepts about all disabilities. If awareness efforts aim for something like that, then I'm all for it. But most "awareness" campaigns focus on specific disabilities or diagnoses, which is both too narrow and too ambitious. Or, the goals are so vague that the word “awareness” itself loses all meaning.

Criptiques Podcast Episode 2

Criptiques Podcast Episode 2: Cheryl Green

Caitlin Wood, Criptiques - May 28, 2014

F*cking amazing. In less than 30 minutes, host Caitlin Wood and guest / Criptiques anthology contributor Cheryl Green bring some of the most fundamental concepts of disability culture and politics to life.

For example: Cheryl Green peels apart an old chestnut slogan about disability:

“People need to get with the program and see us as valuable, complete, whole human beings. And it’s not, 'See my ability, not my disability!' I find that treacly shit to be bullshit. I think that is so silly, 'See my disability, not my disability!' First of all, if you don’t see my disability, I’m not going to get any accommodations. Second of all, c’mon now, how are we going to hide this, you know? And third, why in the hell should I be expected to hide it? Why should one kind of person be encouraged to be proud of some part of their identity, but if it’s a disability, 'Oh, don’t see it, nope, we didn’t see it! Don’t talk about it. It’s bad!' No, it’s not bad. Maybe it’s hard, but it’s not bad.”

Cheryl is also hilarious and on-target in her critique of "disability awareness" ... where it comes from, what it's for, and the bizarre stunts it inspires.

This is more essential listening for people new to thinking about disability, and for people who think they have disability all figured out!

Views from an Adult With Disabilities

The Road Ahead ...

(Cross-posted at Brielle and Me)

Kerith Stull is the mother of a teenage daughter with cerebral palsy. I started reading her blog, “Brielle & Me”, after she commented a few times on some of my blog posts. A couple of weeks ago, we started exchanging emails about doing a collaborative blog post with Kerith posing questions parents of children with disabilities might ask, and my replies as an adult who grew up with disabilities. This post is the final result. We are both posting the same article … with own own introductions … on the same day at the same time on our blogs.

Questions from Kerith, and my replies ...

When did you first realize you were different?

I don’t remember a moment when I realized I was different. When I reached puberty, I assumed dating and relationships were like athletics for me, something I could observe and know about, but not participate in. I was wrong, of course. At the time, though it seemed like the ironclad truth and it was the first time I felt bad about being disabled. Eventually, when I was a young adult and discovered the disability rights movement and disability culture, I started to realize that having disabilities isn’t just about being “limited” by my body. It was also part of my social identity, something interesting and energizing. I am still learning what it means to be disabled.

What good things did your parents do for you? (regarding your disability)

My parents drew a very firm distinction between “me” and “my disabilities". They emphasized my mind and downplayed physical things. That helped me avoid feelings of regret about not being a big, strong, athletic guy in my youth. My parents never got involved in any disability organizations. Although I am now an active participant in the disability community, when I was younger, not being connected to that community actually encouraged me to develop more diverse interests. Above all, my parents always made it clear that I would graduate from high school and then go to a four-year college away from home. This boosted my confidence and gave me a concrete goal for the first part of my life. After that, they let me find my own way.

What do you wish more parents would do for their disabled children?

Parents need to discuss the usual topics with their teenagers with disabilities so they understand the biology of sex, consent, and personal values. They also need to know that they are beautiful, handsome, charismatic, and desirable. Some disabled youth (and maybe you) will have hard time believing it, but they need to hear that this isn’t just wishful thinking. Romantic relationships can be part of their lives. (I highly recommend reading, “Dear 16-year-old Stella” by Australian comedian / broadcaster, Stella Young.)

Introduce your disabled child to adults who have disabilities. It doesn’t matter much if they have the same disability. The important thing is for your child to have the opportunity to look up to an adult who experiences disability in ways your child will recognize, and to see that happy, successful adulthood with disabilities is possible and common. (A great place to find appropriate adult mentors who have disabilities is at your local Center for Independent Living.)

A really good friend can be a life-saver for parents of disabled kids. On at least two occasions, close friends furnished my mother with a very loving kick in the backside when she was seriously stuck over some aspect of my disabilities. On both occasions, these friends told her unvarnished truths she needed to hear, and that helped her, and by extension me.

What can the general public do / say to help people with disabilities?

- Don’t dismiss us, but don’t put us on a pedestal, either. Remember that we are human beings with our own will and agency. We are not symbols, metaphors, tests, or object lessons to make you a better person.

- Trust that we know what we are talking about. Like anyone, we sometimes misunderstand things, deceive ourselves, or just get things wrong. But, in general, we are usually more on top of things than you might think and we certainly know about our own experiences better than anyone else.

- Don’t support disability groups that:

 are not led, at least in part, by disabled people.

 use fear or pity to gain support.

 provide their services in segregated environments, removed and sheltered from the community.

- Support public policies and practices that increase physical accessibility, community integration, and meaningful self-direction for people with all types and degrees of disability.

From Kerith…

So, parents. What do you think? Anything surprising here?

Notice what’s not here. He didn’t mention therapy, IEPs, or equipment – things we parents focus so much of energy on in those early years. I’m sure he would say they were and are important. But, as the child ages, the focus really shifts – or at least from what he’s shared here, it should.

What can we learn?

Your child’s disability is part of their identity. However…

Focus on your child, not your child’s disabilities.

Encourage diverse and individual interests.

Have high expectations.

Encourage independence and independent choices.

Talk to your child about the tough stuff, especially sexuality.

Provide interactions and role models who have disabilities.

Make sure you have a good friend.

Respect people with disabilities.

Give your support to disability groups and public policies that truly include people with disabilities.

Finally…

Although we parents of special needs children have so much to think about and do for our little ones, be sure you’re looking ahead and preparing your child for the disabled adult they will eventually become.

More about Kerith Stull:

In 1995, Kerith was the married mother of a toddler working in marketing. Her life changed dramatically when her second daughter, Brielle, was born affected by CMV (cytomegalovirus). She quit her career and became a stay-at-home mother when Brielle was six months old to focus her time and attention to Brielle's needs. Brielle is now a highschooler and doing well despite CMV. She has CP (cerebral palsy), walks with a limp, and has an impaired right arm and hand. She needs assistance with basic care needs including dressing, bathing, and toileting. Brielle does not have any hearing loss (usually very common for CMV), but she cannot speak due to the CP. Instead, she uses sign language and occasionally uses a communication app on her iPod to communicate when I am not with her to interpret. She functions academically at about a fourth grade level for everything except math, which lags behind. Brielle participates in a work study program at school and loves her “jobs” at CVS and Walgreens. She  bowls in the winter with Special Olympics, plays baseball in the fall and spring on a Miracle League team, and plays soccer on a special needs team with TOPSoccer. She spends her free time dancing with teen idol bands on her iPod, doodling in a notebook, or watching teen shows or Scooby Doo. She has an infectious squeal and a smile that can light up a room.

“Brielle and Me" is a peek into their lives with their special needs daughter – the good, the bad, and the sometimes surprising. The stories Kerith shares here are motivated by a deeper passion — the pursuit of meaning from something that could be seen as so meaningless. Kerith's book about her journey of hope, determination, faith, and love was published in February of 2014.

What questions do YOU have for Kerith?