Monday, April 21, 2014
Disabled People Need Three Things - 1. Accessibility
Last Friday, I proposed that disabled people really only need three things: Accessibility, Money, and Agency. Leaving aside food, clothing, and shelter, which all people need, Accessibility, Money, and Agency encompass all of the “special” needs of disabled people, of all ages and disabilities. This week I’ll try to explain what I mean.
First, Accessibility ...
By “Accessibility”, I mean all of the ways in which disabled people are admitted to physical places and social pursuits that we might otherwise be barred from because of our disabilities. We gain access because of deliberate action to change the physical environment and social structures we live in. For example:
- Making buildings, environments, and services of all kinds physically usable by wheelchair users and people with other impairments. This includes businesses, government offices, recreational areas, houses of worship, streets and sidewalks, transportation services, schools, and homes. It is the gradual and eventually complete transformation of every community’s basic infrastructure so that no unnecessary physical barriers keep us out or restrict our choices. It is the practical ability … not just the theoretical freedom … to go anywhere, when we want, with little or no help from others.
- Changing laws, regulations, policies, and practices that have historically kept disabled people from full participation in all kids of pursuits, including employment, political participation, education, and socialization. It involves knocking down bureaucratic barriers like eligibility rules that screen out disabled people, overly restrictive and unnecessary physical requirements, medicalization of non-medical concerns, overprotective systems that put safety above independence, and other policies that sometimes intentionally, sometimes unintentionally limit disabled peoples’ choices and opportunities.
- Access to assistive technology and individual accommodations, which help individuals adapt beyond basic accessibility. This includes mobility devices like wheelchairs and walkers, simple adapted hand tools and utensils, and computers and Internet services that can be used equally well by people any impairments. It also includes all of these adaptive tools being affordable to all, and designed thoughtfully for the maximum convenience of the user.
- Changing popular misconceptions about disability, which tend to create misunderstanding, fear, resentment, and social separation of disabled people by non-disabled people. In a sense, disabled people are at least partially kept out of full social life by how they are received by others. At the most basic level, what we need is for people to appreciate our specific differences and unique needs, while at the same time regarding us as essentially no different as people from those who are not disabled. It means we should neither be ostracized, nor put on a pedestal.
All of these measures, whether physical or social, involve the central idea of Accessibility … of deliberately creating environments that are as welcoming and functional for disabled people as we know how to make them. They all involve positive actions, sometimes expense, and at the very least individual decision and psychological change. As with other kinds of prejudice, it is not enough just to be nice or refrain from being mean. You have to make a pro-active effort to include disabled people, to meet us at least halfway so that our own individual efforts … hard work, risk-taking, and “putting ourselves out there" … can be effective.
Tomorrow, I’ll take a look at Money … something everyone needs, but which is uniquely empowering for disabled people, when we can get it.
Sunday, April 20, 2014
Weekly Wrap-Up
Monday, April 14, 2014
Tuesday, April 15, 2014
Wednesday, April 16, 2014
Thursday, April 17, 2014
Friday, April 18, 2014
Saturday, April 19, 2014
Saturday, April 19, 2014
What Was Pope Francis Doing?
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.
Scheduling Note
I am going to wait until Monday to post the first of my three-part series of blog posts, Disabled People Need Three Things. I’m thinking of writing something today about Pope Francis washing disabled peoples’ feet. Maybe today, or maybe tomorrow. Anyway, I have been reading the headline about that for a couple of days and I’m really curious what that was about.
Friday, April 18, 2014
Disabled People Need Three Things
I had fun a couple weeks ago writing a three-part series of blog posts on different forms of "Ableism”. So, I have decided to do another series, this time fleshing out another “grand unified theory” of disability. I will argue that disabled people of all kinds only really need three things:
1. Accessibility
2. Money
3. Agency
Over the next three days, I will explain what I mean by each of these. For now I just want to clarify that when I talk about things disabled people need, I don’t count things everyone needs … like food, clothes, and shelter. I’m not talking about curing any diseases or lessening our disabilities through therapies. To me, those are separate concerns. What I am looking it is what people with disabilities uniquely need to live well with their disabilities.
Why am I doing this?
I'm doing it because I think we sometimes get so caught up in specific goals that we lose sight of what we really after. There are thousands of disability-related policies to advocate, hard-won victories to defend, and small, incremental improvements to shoot for. But really, they all relate in some way to these three things ... Accessibility, Money, and Agency. Or, they should relate, and if we are working our asses off for something that doesn't relate, then maybe that's a sign we should reassess what we are doing.
Stay tuned!
Best Article On Assistive Devices
That Crazy Crippled Chick - March 30, 2014
One of the interesting things about “disability pride” is that for people who don’t actually have it, it probably seems like kind of a feeble, made-up attempt to turn lemons into lemonade. I used to think that, myself. I never really felt bad about my disability, but the idea of showing it, embracing it, or celebrating it seemed almost nonsensical to me.
One of the first ways I began to understand a different view was through observing how a lot of disabled people come to see their wheelchairs, crutches, and other assistive devices as more than just tools. I experienced it myself when I used a scooter throughout college and graduate school, and in the same period started using a ventilator at night to help me breathe. I never felt stigmatized by them, and soon I started to feel grateful for them almost like one is grateful to a person. Seeing my scooter or my ventilator after being away from them for a bit made me feel comfort, like I was coming home in a sense.
As I met other disabled people, and got to know some of them online, one thing thing that the happiest, most independent of them had in common was an intimacy and sense of fun about their devices. I don’t know which comes first though. Do you come to embrace and love your wheelchair because you embrace and take pride in your disability identity? Or, does incorporating a wheelchair into your look and personality help you accept and embrace your disability?
This isn’t quite the same discussion “That Crazy Cripple Chick” is having, but what she’s writing about here is closely related, and it is a great starting point for someone who, for whatever reason, can’t seem to view assistive devices with anything but sadness, disappointment, or fear.
Thursday, April 17, 2014
My Cup Runneth Over
This morning I watched a few episodes of the British TV show QI, a a sort of comedy quiz show hosted by Stephen Fry. One of the questions was about how many steps a person can take before definitely spilling a cup of coffee. The answer is between 7 and 10 steps. It is predictable like that because of the physics of liquid oscillation. The liquid in your cup starts moving, and as you take each step, the ripples in the cup build on themselves so that no matter how smoothly and carefully you walk, eventually you are going to spill some.
I was thinking that this would be a good way for disabled people to measure just how off-kilter our walking is ... if weird walking is part of our thing ... or how skilled our handling of a wheelchair is I suppose. Judging from the blotches of tea on the tile floor of my kitchen, I can go at most 3 steps before I start slopping.
On "QI", after Fry explained how oscillation works, he talked about how it might be possible to invent a cup that counteracts oscillation so it would be spill-resistant. I literally did not understand the explanation, but I would buy the hell out that cup.
Wednesday, April 16, 2014
The Mayor Of Swindon
Frances Ryan, The Guardian - April 15, 2014
"Are we still letting mongols have sex with each other?"
Apparently, Nick Martin, the now ex-Mayor of Swindon in the United Kingdom, said this during a council discussion of the "challenges of disabled adults in modern society". He was officially required to apologize for the words he used, tried several times to do so but with obvious insincerity, and has now resigned.
I have no problem with certain kinds of statements by officials being deemed off-limits and requiring apologies. But the words themselves might be only part of the story. I would very much like to know more about that discussion. Was the Mayor's offensive statement accompanied by regressive policy ideas? What did the other people in the discussion think? Were they all appalled, or did some of them chuckle or nod? Was it a casual chat, or were actual policies being debated that could affect real people? What policies were being discussed that could produce this specific statement about disabled people, sexuality, and fertility? That would seem to be important, but so far I haven't seen anyone mention the context.
Absent any other information, I am glad the man resigned. In all likelihood, this wasn't an isolated incident. Martin probably has regressive views on all sorts of people and ideas he disapproves of. However, it does seem like focusing on the words themselves rather than the meaning behind them serves both sides in a rather unfortunate way. The higher officials get to feel good that they have punished the Mayor for a tasteless, embarrassing indiscretion, without reference or apparent impact on any substantive policy issues. Meanwhile, as this Guardian column points out, the ex-Mayor gets to feel like a martyr to "political correctness" and a defender of free speech and old-fashioned plan-spokenness. And he still hasn't been asked to explain why he apparently thinks "mongols" shouldn't have sex. What is he suggesting? Does he think that government entities that were under his Mayoral control should have the legal power to regulate disabled peoples' most intimate choices?
I suspect that there are many more government officials who feel the same way about the rights of intellectually disabled people, who would never expose their beliefs with such offensive words. That is not a comfort.
I suspect that there are many more government officials who feel the same way about the rights of intellectually disabled people, who would never expose their beliefs with such offensive words. That is not a comfort.
Would Martin still be Mayor of Swindon if he had used more polite words to advocate state control of an entire population's fertility and sex lives? Words can be hurtful in and of themselves, but they also reflect ideas, and ideas can be translated into action. It's the actions I worry about more.
Tuesday, April 15, 2014
One Year Later
In honor of the Boston Bombing survivors, one year later, I am re-posting this great video by AmputeeOT:
Most of what she says applies equally well to anyone experiencing a new disability.
Survey Results
A big thank-you to the 29 people who have completed my survey on what they’d like to see in a disability-themed website. Here are some of the results so far. I have organized the top rated choices in each section … with ties grouped together. I will be using these results to help shape a more extensive Disability Thinking website. In the meantime, the survey is still open, so if you haven’t done it yet, feel free.
Website Features
First Place
- Disability News - Links & Analysis
- Articles by Invited Writers
Second Place
- Resources - Links by Topic
Third Place
- Blogs by Selected Bloggers
Fourth Place
- Personal Stories by Invited Writers
- Advocacy - Features & Campaigns
Topics
First Place
- Accessibility
Second Place
- Assistive Tech & Mobility Aids
Third Place
- Disability Rights Laws
- Disability In Popular Culture & Media
- Identifying & Combating Ableism
- Disability Policy & Politics
Fourth Place
- Medical Care
Who Did The Survey?
- 72% Disabled
- 12% Disability Services Providers
- 8% Family Member of Disabled Person
- 8% Other
Of The Disabled People ...
- 85% Physical / Mobility Impairment
- 30% Mental Illness
- 30% Chronic Illness
- 15% Sensory Impairment
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