Saturday, May 31, 2014

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

black and white photograph of Rosa May Billinghurst sitting in her adapted wheelchair after being arrested, surrounded by police officers and members of Women’s Social and Political Union
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!

Friday, May 30, 2014

Best Article On Disability By A Parent

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.

Thursday, May 29, 2014

Job Discrimination: Still Looking For Feedback

Icon of a red question mark with white stick figure leaning on it
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.


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.

Wednesday, May 28, 2014

Criptiques Podcast Episode 2

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

Disability Thinking / Brielle & Me -- Views form an Adult With Disabilities Guest Post with Andrew Pulrang from Disability Thinking and Kerith Stull from Brielle & Me
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.
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.


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:

portrait photo of 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?

Tuesday, May 27, 2014

Questions About Employment Discrimination

Icon of a red question mark with white stick figure leaning on it
I’m working on grant writing today, so how about another question for feedback?

How would you describe the most common ways that disability discrimination hinders employment for disabled people? Do employers simply want to avoid perceived hassles? Are they worried about specific perceived problems with disabled employees? Do disabled applicants and employees sabotage ourselves without realizing it? Do laws like the Americans with Disabilities Act help?

Please be as specific as you can. It’s easy to cite “discrimination”, but how, specifically, does it play out in real-life? Do you have any specific ideas on how to make the employment situation better for disabled people?

Later this week I will collect comments and write a more complete post on employment discrimination.

Monday, May 26, 2014

Memorial Day Post

"The true story of airman Douglas Bader who overcame the loss of both legs in a 1931 flying accident to become a successful fighter pilot and wing leader during World War II.”
When I was a kid, I went through a Second World War aircraft enthusiast phase. So, I’ve known a bit about Douglas Bader since I was very young. Memorial Day seems like a good occasion to think about him as a war hero and a fairly traditional but still kind of thrilling disability role model. Here are the highlights of Douglas Bader’s story as outlined by Wikipedia:

• In 1931, Royal Air Force pilot Douglas Bader crashed while attempting low-altitude aerobatics. He underwent surgery during which one leg was amputated below the knee and the other above the knee.

• After a lot of painful rehabilitation, he walked again with prosthetics, drove an adapted car, and was able to fly again. It looked as though he could continue to be an RAF pilot, but despite proving his flying ability, the RAF “invalided” him out of the service, reportedly because there were no regulations to address a situation like Bader’s. It wasn't the first or last time bureaucratic technicalities were the cause ... or excuse ... for a disabled person's lost opportunity.

• He re-joined the RAF just before the outbreak of the Second World War; this time, he was accepted as an active pilot. During the war he scored 20 “victories” (planes confirmed to be shot down). That's a lot.

• In 1941, he crashed over occupied France. As he was bailing out, one of his prosthetic legs got caught inside the cockpit. By opening his parachute, the force snapped the prosthetic’s strap, which freed Bader from the falling airplane … leaving his prosthetic behind of course.

• Bader was taken prisoner by the Germans. Initially they treated him well, even arranging safe passage for British planes to drop replacement prosthetics for Bader. Still, he kept trying to escape, sometimes almost succeeding. In the end he was sent to Colditz Castle, an “escape proof” POW prison. He was liberated in 1945 by the First United States Army.

• In 1976, Douglas Bader was honored by the Queen in 1956 and 1976 for services to disabled people.

• Nobody’s perfect. Bader was a “staunch” Conservative who supported racist and apartheid governments in Rhodesia and South Africa, and often spoke out against trade unions and anti-nuclear campaigners in the United Kingdom.

Sunday, May 25, 2014

Institutionalization Followup

Amy Ellis Nutt, The Star-Ledger - May 25, 2014

This article is a great counterpoint to my post yesterday about the practice of placing significantly disabled children and adults in large institutional facilities. You might say that Ellen Petroff’s parents present the other side of the argument … that their daughter, now 44 years old with multiple disabilities and health problems … needs 24 hour care from a very specific set of people which they can’t conceive her receiving anywhere but where she has been for 30 years. New Jersey's Developmental Disability program definitely needs to answer their questions more specifically than to say, “We’ll find a place”.

However, I think the article and everyone in it is missing a few basic truths. For one thing, moving anywhere after 30 years in one place is scary and risky for anyone, even those who don’t have disabilities. For another, I see hints that some of Ellen’s health problems might be the kinds that develop later in life, due to age but also to inactivity and maybe slightly complacent health care. Was she hospitalized so many times because her medical problems are just that severe? Or, could some of them have been avoided with slightly better, more creative health care? How do we know that her health won’t improve moving to a smaller group home, closer to her family, maybe with new aides and doctors able to approach her care with a fresh take?

Finally, I think the Petroff family’s concerns point to one of the insidious affects of these highly centralized, sheltered, sequestered institutions; they breed a sense of dependence and indispensability. Ellen’s parents can’t conceive of anyone else looking after their daughter. They may be right to worry, but that calls for especially thoughtful preparation, not reversing the trend towards closing institutions and helping disabled people live integrated lives in their own communities.

I do think choice should play a role here, but who’s choice? Can Ellen make a meaningful choice? How relevant are her parents’ wishes at this point? Plus, there’s the specific choice to stay where you are or move, and then there are the additional choices that could open up for Ellen if she chose to leave the institution.

This is a transition period, and transitions are always hard. That doesn’t make them wrong.

Weekly Wrap-Up

Disability Thinking Weekly Wrap Up in white letters superimposed over sepia-tone photo of handicapped parking spaces
Monday, May 19, 2014
Tuesday, May 20, 2014
Thursday, May 22, 2014
Friday, May 23, 2014
Saturday, May 24, 2014

Saturday, May 24, 2014

Beautiful Photo Collection

black and white photo of a naked woman leaning back in a manual wheelchair, viewed from the back
sepia toned photo of a naked woman in a racing wheelchair, arms wrapped around herself, viewed from the front
These are just two from a collection of photos by German photographer Rasso Bruckert, posted today at the Onoffman: Abled-Bodies Tumblr blog.

How Could We Have Thought It Was Okay?

Photo of Sunmount Developmental Center, large four-story white building.
Sunmount Developmental Center, Tupper Lake, New York
The other day, I was reading an interview with the creators of one of my favorite TV shows, "The Americans" … which has nothing at all to do with disability … and this passage in the interview jumped out at me:

“ … it turned out that her parents had this huge secret: They’d had a child that they prepared to receive in the home, and it turned out the child was severely disabled. At that time, what you did was put the child in a home and told the kids and everybody that the child had died, so that’s what they did.”

The person saying this was talking about a real-life family that included a famous psychologist who lived during the 20th century. The child was his and his wife’s. The TV writer cited the example to illustrate how seemingly normal, stable families can harbor really massive secrets that profoundly affect everyone in the family, even if the secret is never discussed or formally revealed.

What struck me most, though, was the sentence:

"At that time, what you did was put the child in a home and told the kids and everybody that the child had died, so that’s what they did.”

I won't go into the long history of institutionalization in the United States, except to say that in some ways it is not a very long story and fairly recent as these things go. Suffice it to say that as the quote above indicates, there were several decades in the 20th Century when it was considered progressive and humane, if not precisely desirable, for families to place children as young as infants in large institutions that were a strange mix of hospital, residential school, and prison. It was a practice widely endorsed and recommended by doctors and accepted or embraced, (I don't want to speculate too much on which) by families. Many, if not most of these children would live out their entire lives in these institutions. Others would be fortunate enough to leave and go on to carve out real lives for themselves. For further reading, I recommend Mike Earvin's blog, Smart Ass Cripple, in which he often refers to his time in an institution, which he calls the Sam Houston Institute of Technology, (S.H.I.T.).

A few big institutions still exist … some of them in the exact same buildings purpose-built in the early 20th century. Small "group homes" thrive ... the large institutions' direct descendants, which are either a vast improvement, or an unfortunate half-measure, depending on your point of view. Yet, we have clearly passed the era where regimented, medicalized, institutional “care” was considered “the best thing”.

Still, it seems to me that we as a society haven’t fully grappled with the moral implications of this period when it was considered a difficult, but enlightened thing to do to place your newborn infant in what amounted to a massive hospital, more or less for life, and to some degree or other write the child out of your family’s life. We sort of know that it was a horrible thing to do, but we tend to excuse it by implying that people didn’t know better back then.

It reminds me of how we sometimes explain slavery … incorrectly I believe. We think of it as some kind of temporary mass psychosis that was a terrible shame, but what you gonna do? We are a more just society now, humanity progresses, people are smarter, etc. But really, were people all that different only 150 years ago? Were people that much more ignorant of disabilities 50 years ago? Or was there a more deliberate ideology at work?

So here are the questions I'm thinking about:

Did most people in the "institutionalization" era sincerely believe it was the best, most humane way to treat children ... later adults ... with significant disabilities? Or, was there always a buried understanding that it was wrong somehow?

Did medical and educational professionals truly believe that institutions could provide better care and upbringing than families?

Were medical and educational professionals at the time genuinely uninformed about certain kinds of disabilities. For example, did they sincerely believe that intellectually disabled people were in some way "less than human" ... deserving of humane care, but not human rights?

Did families really the marketing put on by these institutions, that they were highly competent, humane facilities providing top-notch care? Or, did many or most families kind of know on some level, before Willowbrook, that institutions were pretty terrible?

If families did harbor hidden fear and shame about institutionalizing their disabled children, what kept them from just bringing them home? What arguments did they hear that counter-balanced their more negative feelings about institutionalization?

If the expense of care at home was a factor, why is only recently that people are starting to suggest that the same money spent on brick-and-mortar institutions should simply be given instead directly to families?

If people either lied to themselves en masse, or severely misunderstood the nature of disability, then what sins of self-delusion or ignorance might we be committing right now against people with disabilities? What will our grandchildren and great-grandchildren look back on in our practices, and wonder how we could have been so cruel or stupid?

Are there thought processes and precautions we can use now to prevent ourselves from making fundamental mistakes in this area that we would be ashamed of later?

Please comment below. I would like to know your thoughts on this. It seems like a really big deal to me that is rarely discussed. Let's discuss.


I debated whether to mention this, but what the hell ...

The other thing that got me thinking about the institutionalization era was reading the current Atlantic Monthly cover story, "The Case For Reparations: An Intellectual Autopsy", by Ta-Nehisi Coates. Coates reviews the history of slavery in America, and argues that it wasn't an isolated practice, but rather was succeeded after its abolition by other policies and practices deliberately designed to promote white supremacy, and that the effect of these policies can be measured today in the economic lag still experienced by African-Americans. This article, and piece on it by Matthew Yglesias at on how the economics of "reparations" might work prompted me to wonder if disabled people as a group have ever suffered a legally-sanctioned, systemic robbery on a scale that might, theoretically, call for some sort of systemic reparations. And I hit on institutionalization. I don't know where to go with that, but it's something to think about.

Friday, May 23, 2014

Training For Police

David Dishneau, Associated Press - May 22, 2014

This seems like a good idea, especially the part about training being partly conducted by people with intellectual and / or developmental disabilities. Personally, I would like to see it folded in with training about other disabilities, like deafness (people who may not respond as expected to voice commands), and conditions like Cerebral Palsy where people can be mistaken as drunk or drugged, or assumed to be intellectually disabled. But this is a step in the right direction.

One question still nags me about the Ethan Saylor case. What role did Mr. Saylor’s care aide play? In some of the stories about the incident, it sounded like his aide … an employee of a disability agency paid to help Mr. Saylor in the community … tried to de-escalate the situation and explain to the security guards how best to deal with Saylor’s emotional outbursts. I still wonder whether the guards just dismissed her input, and if so, why. Aides like this don’t wear professional costumes like doctors or nurses. They aren’t always hyper-articulate, authoritative people with Ph.Ds. And they are disproportionately young women. Did they just not take her seriously?

Not that I want things to go too far in the other direction … where nobody listens to the disabled person and automatically looks for an aide to talk to instead. But in a crisis, if there is paid aide, a close friend, or a relative present, they should have a voice and that voice should be heeded as much as possible.

"Inspirational" Thoughts

A lot of people still use the word "inspirational" to describe people with disabilities, despite scores of articles and blog posts by disabled people saying, emphatically, "Please stop it!”

I have even seen online articles by disabled people, writing that they can’t stand being called “inspiring”, followed by comments from people who: a) enthusiastically approve of everything the writer has said, and b) telling the writer how “inspiring" they are. Um, what did I just say? WHAT DID I JUST SAY?

Even quite a few disabled people talk about other disabled people being “inspiring”, or claiming that part of their life’s mission is to “inspire” others.

Why is the word so persistent? Is it just a handful of grumpy crips who hate “inspirational”, our voices amplified by free blogging software? Have people heard our arguments for why it’s offensive and just decided we’re wrong?

I think there's something else going on here that has nothing to do with disability.

I think "inspirational" has become a buzzword that represents the opposite of controversy, cynicism, and irony. "Inspirational" things are good news, things that make you happy, things you admire. It is the opposite of more bad news, things that make you angry or hopeless, things that you dislike or ridicule. "Inspirational" also implies simplicity. It's good stuff that has no dark side, no hidden agendas, that can't be deconstructed, turned on its head, or satirized.

A lot of people crave this. They are sick to death of exposés, stories-behind-the-stories, "real truths", ridicule, snark, and fashionable pessimism. So, when something drifts by in the cultural stream that seems just plain awesome, and makes people feel better about the world, a shorthand way to explain its appeal is to call it "inspirational".

Disabled people crave this, too. Many of us are only reluctant advocates. We don't all have the reflex to ferret out hidden ableism … the overt kind is hard enough to deal with. Lots of us love stories of personal achievement, or human kindness, and find them a lot more uplifting than yet another lamentation about why all businesses aren't accessible yet. We want very much to think that individual persistence and a positive outlook can overcome deep systemic barriers against disabled people. We want to be “inspired", too.

I don’t want to deny people the good feeling of being “inspired”. When it comes to disability, I just want them to think a little bit deeper about what, exactly, is inspiring, and stop assuming that our mere presence is some kind of laudable accomplishment. So, here is my two part proposal:

1. We call a truce and in general let people describe us as “inspired”, or include disabled people in the broader pantheon of people and things that are “inspiring”.

2. On a personal level, when someone says that they find us “inspiring”, or calls another disabled person “inspiring” in our presence, we should reply, “That’s nice. Can you be more specific?”

How about it? Is this a workable compromise?

Thursday, May 22, 2014

Another Bit On Disability Gear ...

I posted my thing about adaptive equipment just a few minutes ago, and then found this on Tumblr:
"do u ever sit in an office chair and end up smacking the sides because you are looking for the pushrims” — bittersnurr
“Yup” — winglessdemon

I Love My Ventilator ... And Other Thoughts On Disability Gear

Last Friday, I said that I love my ventilator, the machine I use every night that helps me breathe. I have almost an affection for it. It comforts me. I always feel a little insecure if I’m not within an hour’s drive of it … even though I don’t use it during the day. I added that I felt the same about my electric scooter when I used one to get around campus when I was in college.

I wondered what other disabled people feel about their various items of “disability gear”. Here are the responses I got on this blog and over on my Tumbr blog:
"I've had a power wheelchair for years after having used a scooter most of my life. I definitely like the wheelchair better by comparison, but I would shy away from attributing real emotion to assistive technology. It's great thing it's available, but I view it as a tool. Hope others chime in.” — Rob J. Quinn, I’m Not Here To Inspire You
"I am coming to terms with my new limits and getting used to the cane, and very very slowly coming to terms with the idea of using a chair and reclaiming my life. The process has been incredibly hard. Fucking pride man… and like this long standing idea that if you can walk, you shouldn’t use a chair.” — Tattered Obsidian
"I make my wheelchair a fashion statement. It’s my best accessory. It’s my lifeline to independence - without it, I’ll be so dependent. Plus… I use it to get the hot guys to notice me. ~ V :)” — Vilissa Thompson, Ramp You Voice!
"We don't have a lot of specialized equipment for our 18yo daughter with moderate cerebral palsy any more. There were days when our whole house was overflowing with special cups, scissors, pencils, leg braces, hand splints, bulky seating equipment, huge car seats, bath chairs, nesting benches, switch toys, and over-sized exercise balls. There are still things that aren't typical for an 18yo - sports cups instead of glasses, a bib loaded with paper towels to soak up spills, a retractable badge hanging from her belt with a washcloth to wipe her mouth, a basic bath chair available at any drugstore. But, I have to say, it's nice to have less special stuff and less clutter. Don't get me wrong, I actually do love what we have, but only because they serve a necessary purpose.” — Kerith Stull, Brielle and Me
"My son when he was younger use to use a walker but when he started Kindergarten he began to use arm-band crutches. He has Arthrogryposis but it only effects his lower part of his body. He has very little muscle in his lower limbs. We keep an older set at the top of our stairs so he doesn't have to crawl around. We've had to purchase 4 so far. We can adjust them as he grows but it only goes to a certain height. The problem we have come across is the rubber bottom part of the crutches wear out quickly and aren't easy to find. We try to buy extra so we have them on hand. I tried to find a place locally that we could donate some of his leg and body braces from when he was younger but I guess it's a liability to use used equipment. We do have a wheelchair as well for when h e's had surgeries or when he breaks a bone, which he does often because he has brittle bones. But we pay a monthly rental fee for it. Our goal has always been to make easy and as normal for him around the house. He's now 9 years old and is pretty strong!” — Mari Blair
People appreciate the practical value of adaptive equipment. Wheelchairs, crutches, and all kinds of other devices make life easier for disabled people. If you have an impairment, like not being able to walk, then equipment like a wheelchair is liberating.

On the other hand, we live in a society where assistive devices still tend to symbolize disability. You still hear people talk about someone being “wheelchair bound”, and “throwing away the crutches”, as if the equipment is the disability. While it is natural for people adjusting to new disabilities to feel negatively at first about adaptive equipment, I think that people who continue feeling awful and stigmatized by their adaptive devices tend also to have negative feelings about their own disabilities, and maybe a bit of self-loathing, too.

One factor I think gets overlooked, however, is the quality and fit of adaptive equipment. A heavy, one-size-fits all rental wheelchair is not as liberating as a custom fit lightweight. A hearing aid that doesn’t work properly can be literally a pain. Having a bunch of gadgets you didn’t choose, that someone else told you would be useful but aren’t, can be demoralizing.

In her later years, my grandmother was, as she would say, “lame”. She and my grandfather lived in a nice condo in Florida, but she rarely went out, and my parents were pretty sure it was because she didn’t like being seen in a wheelchair. Mom and Dad interpreted that as Grandma being vain and old-fashioned, and it saddened them to see her cooped up for what they felt was no good reason. "Fucking pride man."

They may have been right. Grandma was born before the 20th century started, and she was, in many ways, “proud”. Thinking back on it, though, I wonder whether part of the problem was that in the late ‘70s she simply didn’t have access to adaptive equipment that wasn’t cumbersome and unnecessarily ugly. I’d love to travel back in time and give her a sharp-looking, powered Hoveround or Jazzy. Grandma had a walker, too, that was functional but drab. I wonder if she would have enjoyed one in cool colors … maybe some pinks. She liked pink.

I think it’s important for both disabled and non-disabled people to remember from time to time that disability gear is meant to be liberating, not a millstone. A walker is not a disability; it makes a certain kind of disability easier to live with. And it’s not crazy or some kind of conscious stance that many of us feel close to our devices. We don’t like strangers randomly touching and handling our wheelchairs, and when our canes and walkers are taken from us we feel incomplete and vulnerable. My ventilator was portrayed to me as an unpleasant last resort before I got it, but I feel like I am really at home when it’s there … even if I’m in a motel room in a strange city.

I’ve never decorated any of my adaptive items, but you know, my tracheostomy tube uses disposable fabric ties. Maybe one of these days I should see how it feels to wear one in a chosen color other than hospital white.

Tuesday, May 20, 2014

Best Disability Article Read In Bed On My iPhone When I Couldn’t Get To Sleep

Caitlin Wood, The Hairpin - September 25, 2012

I didn’t even have my glasses on. Reading stuff on my iPhone, in bed, in the dark, is my last-resort move to combat insomnia. The problem here was that far from making my sleepy, this piece by Caitlin Wood energized me. None of what she says in the article is especially new to me, but her tone is fantastic … funny, assertive, and self-depricating all at the same time.

Then I had to follow the link to Where’s Lulu?, and it was all over. The only reason I slept at all was that my phone ran out of juice.

Monday, May 19, 2014

Doctors ... Just Relax!

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Leana Wen, National Public Radio - May 17, 2014
"More than half of medical school deans report that their students aren't competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don't require clinicians to demonstrate knowledge or skills in treating patients with disabilities.”
So disabled people get measurably worse medical care because caring for us properly is too hard?

This reminds me of a circular argument we sometimes hear in public education. Classroom teachers often say that they shouldn’t be teaching significantly disabled students because they aren’t properly trained, like Special Ed. teachers are. Their belief is self-fulfilling. When a teacher decides that teaching disabled students it is beyond them, then they will, in fact, do a pretty poor job.

I think it’s the same with doctors. An ER doctor doesn’t have to know all about every disability to treat a disabled patient well. What they need, I think, is a little more confidence, an open mind, and really good listening skills.

The doctors cited in the article don’t believe they are “competent” to treat disabled patients. I would agree that many of them are insensitive and fearful of disabled people, but I don’t accept that broadly speaking they are incompetent. We are people, not internal combustion engines or integrated circuit boards. What doctors need is to realize how similar we are to other patients, not how different. They should be more confident, and not shy away from us just because we aren’t the norm.

The problem is that these doctors do end up treating us anyway especially in settings like the ER; someone’s got to. And when they do, as often as not, they are awkward, rushed, and unresponsive. They can do better, but because they don’t think they can, they don’t.

A bit more training in medical schools might help, but I don’t think it would take much. Instead of a whole course, what doctors need to hear is: “Relax! You are a fully qualified physician. Just do you thing, listen to your patient, and quit trying to pass the buck.

Still Seeking Comments ... How Do You Feel About Your Disability Equipment?

A couple of people have responded to my request for comments on how disabled people feel about their adaptive equipment. In a “Work In Progress” post on Friday, I said that I Love My Ventilator, and that when I used to use a scooter, I didn’t just use it, I enjoyed it and felt an affection for it. I’d like to hear from a few more people, because I know that there is a wide range of feeling among people with disabilities for the equipment they use.

Just because I love my disability gear doesn’t mean that’s the “right” way to think about it. There are valid reasons for people to feel indifferent or even hostile towards the equipment they use to adapt to their disabilities and surroundings. Also, I think most of us have both good and bad associations at various times. Not to mention that how well or poorly equipment is designed, and how it looks, has to make a difference.

So seriously … what do you feel, if anything, about your wheelchair, walker, cane, hearing aid, scooter, ventilator, or whatever “specialized” items you use specifically related to your disability? The idea is that I’ll include comments in my finished post on the topic, to go along with my own thoughts.

You can comment below, or if you prefer, send me an email.

Saturday, May 17, 2014

Late Night / Early Morning Music

"American Girl" Doll Petition Still Needs Signatures

I first saw Melissa Shang's petition to add a disabled “American Girl” doll back in late December. I checked in again in January, at which point the petition needed 26,000 more signatures to reach its goal. As of today, it still needs about 7,300 more.

As far as I can tell, Mattel, the “American Girl” brand’s manufacturer hasn’t committed to adding a disabled doll to its collection, although a spokesperson praised Melissa’s efforts.

I’m sure they get tons of very specific requests, since the whole point of the “American Girl” collection is to represent American girls of all kinds, from all walks of life. For that same reason, though, I don’t understand why they haven’t been more decisive about it. Maybe when Melissa’s petition reaches its 150,000 signature goal they’ll use the occasion to make an announcement.

A Fine Turn Of The Phrase

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I don’t know why, but I just really love this description:
"Do you know the feeling of when it is like every step is wading through treacle? You don't need a physical disability to know how that feels. Combine that with a left leg acting like a bung shopping trolley wheel and a left arm that is twisted like a pretzel and it really is a pretty picture.”
She Types Things - April 30, 2014

Photo Of The Day

Self-taken photo of person's feet in dusty black boots, with end of multicolored cane between them

From the Tattered Obsidian Tumblr blog, via Wheelie Wifee.

I highly recommend reading what the Tattered Obsidian blogger has to say about this photo. It relates to the post I'm working on about "loving" or appreciating our disability-related devices, rather than hating or merely tolerating them.

Friday, May 16, 2014

Photo Of The Day

Blonde woman in an electric wheelchair, wearing floral printed dress, looking surprised, next to bronze statue of a man, without head in a museum atrium
From the jillypeppa Tumblr blog. Fashion Blogger / Model Jillian Mercado.

Work In Progress … I Love My Ventilator

Do you love your wheelchair? Or, your scooter, crutches, walker, or cane?

I love my ventilator. “Love”, of course, might not be the right word, but it’s close enough. I feel good about using it. I feel a bit insecure when it’s not accessible to me for awhile. I am grateful for it because I know how it helps me, but it also feels comforting. Even though technically I rent it, it I feel like my ventilator is mine.

When I used an electric scooter in college to get around campus, I loved it, too.

When I was in grade school, and had to wear ankle and foot splints for a few years, I hated them, mostly because they hurt. I don’t think I ever felt stigmatized by any of the disability-related “gear” I have used.

If you use any kind of adaptive equipment, do you love it, feel attached to it, hate it, or tolerate it? Do you feel stigmatized by it, or do you make it a fashion accessory? Or, do have no feeling or opinion at all?

Please share your thoughts in the comments below, and I will include them in a more complete post on how we think about the devices we use.

Thursday, May 15, 2014

Mia Mingus On "Crip Solidarity"

Mia Mingus, Leaving Evidence - May 3, 2010

I just mentioned in my last blog that the Stella Young essay Dear 16-year-old Stella is my favorite piece of writing on disability. I think this post by Mia Mingus is now the runner up for me. For those of us with disabilities, it challenges us to be better “crips”. I think it can also help explain to non-disabled people … and disabled people just starting to explore what disability means ... what, exactly, “crop culture” is supposed be.

Stella Young On "Inspiration Porn"

Megan Griffo, The Mighty - May 14, 2014

I have been reading here and there about Australian Comedian / Broadcaster Stella Young doing a TED Talk in Sydney, and finally here is a chance to share the video of her talk. Any time Stella Young writes something or gives a presentation on disability it’s worth tracking down. As it stands, she is the author of my favorite piece of writing on disability, Dear 16-year-old Stella.

Here, she introduces the TED audience to the concept of “Inspiration Porn”, and gives a pretty convincing argument for why it is a bad thing, not just something that rubs disabled people the wrong way. She also asserts that disability isn’t “a bad thing”, which is an idea I understand and basically agree with, but I think is very hard even for some disability rights folks to swallow. Personally, I would prefer to say that disability isn’t “as bad as you think”, but I get what Stella means here.

Ironically, I found the video via Ramp Your voice, on a website called The Mighty, whose slogan is “Superheroes Among Us”, and appears to traffic in a form of Inspiration Porn. They present the video with seemingly no awareness at all that they practice at least some of what Stella speaks against. I’m glad they liked her talk and happy they offered it up, but it shows just how ingrained the inspiration instinct is, especially for a certain kind of “good guys / let’s all be positive” organizations and websites.

Pass The CRPD ... For Spite

Phil Pangrazio, AZ I See It, - May 14, 2014

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A few weeks ago, I noticed a new round of social media activity in support of the UN Convention on the Rights of Persons with Disabilities (CRPD). The reason for the renewed activity was that the Senate had finally approved a different United Nations Treaty, on fisheries. This prompted CRPD supporters to launch a slightly tongue-in-cheek campaign asking: Why does the Senate feel it important enough to pass a treaty on fishing, but can’t see it’s way clear to pass a treaty on the rights of people with disabilities?

The "fish" formulation took off, and it's great to see mainstream newspapers, like the one linked above, using it in a renewed push to pass the CRPD on the grounds of decency and common sense.

The subtext of this, of course, is also the reason why the CRPD has failed to pass twice. It’s got almost nothing to do with disability rights. The problem is that it is a United Nations treaty, and a handful of highly ideological right-wing and religious organizations argue that the UN itself is illegitimate, powerful, and hostile to freedom and US sovereignty. Any UN treaty that fails in the Senate is a victory for these people, almost regardless of the treaty’s topic.

The fishing treaty probably passed because it’s about as niche and obscure a treaty as can be imagined, so the advocacy knives weren’t as enthusiastically out for any conservative Senators who dared to vote for it.

Take a look at this May 5 piece by two attorneys for the Home School Legal Defense Association, one of the strongest opponents of the CRPD … and and of the UN itself.

William A. Estrada, Esq., Director of Federal Relations and Cordell J. Asbenson, Congressional Action Program Director
Home School Legal Defense Association - May 5, 2014

Read the whole piece ... but here are my "favorite" quotes:
“HSLDA has fought on many occasions to stop ratification of United Nations treaties, most recently with our work to defeat the UN Convention on the Rights of Persons with Disabilities (CRPD). While there are many reasons HSLDA opposes the CRPD, one key reason is that the United Nations is openly hostile to religious freedom, the right to life, homeschool freedom, and parental rights ... ”
"The modern UN has become a powerful global player that is hostile to many freedoms that we as Americans and homeschoolers take for granted. UN treaties have become tools used by unelected, power-hungry international bureaucrats to gain control over nations and free peoples ... ”
"Protect Your Family
If you aren’t yet a member of HSLDA, consider joining today! HSLDA’s work benefits homeschooolers in the United States and around the world. We invite you to participate in our ministry to the homeschool community.”
Oh, right. Don’t forget the membership come-on at the end! Protect your family … pay us dues!

Clearly, this organization is about more than the practice and policies around home schooling. I doubt they care much about the concerns of left-wing, hippie parents who home school their kids. Their constituency appears to be right-wing religious families who feel like the world is against them, and believe that the Federal Government and the UN are agents of godless socialism. I also question whether the organization has any special insight into the unique needs of kids with disabilities … who sometimes have very specific reasons to benefit from home schooling that have nothing to do with religion, traditional values, or the meaning of national sovereignty.

All of which is to simply say that for the most part, opposition to the CRPD is bullshit. Opponents may have a slight area of actual disagreement to the treaty, insofar as its language suggests that kids with disabilities have some rights that could take precedence over what their parents want to do. It is possible to view that catastrophically, as total usurpation of parental authority. You can also view it more sensibly, as recognition that children ... even disabled children ... are human beings, and not their parents' property.

The irony is that we could have a real discussion about whether the UN has enough power and relevance do anything about disability rights around the globe, other than pass what is essentially a set of suggestions. CRPD opponents fear the awesome power of the UN, while the only real argument against the CRPD is that it’s probably too weak.

That said, I really think the Senate should pass the damned thing. For one thing, all UN treaties have ambiguous authority. That’s part of the point of the UN … it relies less on naked power and more on information, persuasion, and role-modeling. Second, it is embarrassing for the United States to be one of the few holdout countries on this, when it basically pioneered the whole concept of “disability rights laws”. Finally, at this point, I want to see the CRPD pass to spite its opponents. They are so dishonest and cynical that I want to beat them just to see them beaten.

That’s not very noble motivation, I suppose, but it’s how I feel.


For more information on the UN Convention on the Rights of Persons with Disabilities, visit