Newbie FAQs: Advice For Children And Youth With Disabilities

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What Do Children And Youth With Disabilities Need To Know About Disability?

There are thousands of ways to answer this question. Most of them are based on a few core ideas about disability. These are ideas that don’t always come naturally to young people with disabilities or their parents, which is why I think it’s a good idea to spell them out.

- Physical access and accommodations to your disability aren’t personal favors or privileges. They are rights you have as a citizen. No matter what your disability is, or how “severe” it is, you have the right to go everywhere non-disabled people go, and do everything non-disabled people do when they get there.

- You may need help from other people all of your life, but that doesn’t mean you have to make people like you all the time. It’s good to be kind, polite, and cheerful, but you can also be angry sometimes, sad sometimes, grumpy sometimes. It’s also okay to decide that you don’t like someone. You won’t be abandoned just because you made a caregiver angry. You are not a burden. You are a person, and you don’t have to “earn” your care by being a perfect angel and never complaining.

- It’s good to make careful decisions about the things you want to do, and how you use the energy and resources you have. But don’t give up on exciting opportunities because you think might need help and you don’t want to be a bother.

- You don’t have to be able to do everything by yourself, exactly the way other people do things, to be independent and successful. It’s okay to do things differently, and it’s okay to get help. Independence is about making your own decisions and organizing your own life, not being able to walk or tie your shoes.

- There are literally millions of people with disabilities all over the world who have an idea of what it’s like having your disability. Don’t turn away from others with disabilities because disability makes you sad, or because you think it will keep you from fitting in and being more “normal”. Other disabled people can be a great source of advice, friendship, and support you can’t really get from anyone else.

Incidentally, these are pretty important ideas for adults new to disabilities as well.

Does anyone have other ideas? Share them in the comments!


Newbie FAQs: MLK Day

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What does disability have to do with the Martin Luther King Holiday?

It’s risky to draw out too many similarities between disability and race. It’s really easy to make these kinds of analogies glib and appropriative. It’s also tempting, and not in a good way, to try and make everything about the Civil Rights Movement match up perfectly with the Disability Rights Movement. The whole thing can get pretty ridiculous and insulting very quickly.

The reason we may think of making the connection is pretty valid though. The everyday experience of both race and disability include social stigma and practical discrimination. In fact, there are reasonable arguments to be made that both race and disability are actually social constructs … that they are in fact all about prejudice, and very little about anything else. I think it’s also worth acknowledging that historically, both the Civil Rights and Disability Rights movements focused on laws and policies to bring about change. And both, to different extents, have seen the limits on how much you can change everyday life by changing laws. You have to do it, but it’s not enough by itself.

Finally, I would say that while the experience of disability is very different in many ways from the experience of race, it is nevertheless true that for many of us with disabilities, disability feels more like race, or other social identities, than it feels like illness or disease. That is still a surprise to some folks when they hear it, and it tends to be a key conceptual breakthrough for disabled people, too, when they have that realization.


Newbie FAQs: Accessibility

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Why are so many buildings still not handicap accessible? Isn’t that against the law?

This is a very good question!

Most US states* have building codes that include standards for accessibility, including:

- Minimum width for exterior and interior doors

- Measurements for building safe, usable ramps

- Proper height and placement of toilets, sinks, stalls, etc. in public restrooms

- Proper height of tables and service counters

- Minimum width of aisles and pathways inside buildings

Most accessibility standards are designed to make spaces accessible to people using wheelchairs. However, there are also provisions for people using other mobility aids, like crutches and walkers, blind people, and deaf people. The idea is that the default design of all public spaces should be usable by the maximum number of people, including those with disabilities. By building in accessibility as a standard practice, there is less need for more expensive retro-fitting and / or inadequate second or third choice ways of providing service to disabled people.

Accessibility standards are part of building codes, alongside structural standards, fire safety, and all the other basic standards for construction we generally take for granted. They are not options. They are as binding as any other component of building codes.

In addition to state codes, there are the ADA Standards for Accessible Design, which are designed to ensure that accessibility standards have some uniformity everywhere in the United States. By and large, if you design accessibility features according to these standards, you will be in good shape.

So, why are so many buildings still inaccessible?

First of all, accessibility standards have the most effect on brand-new buildings, and to a somewhat lesser extent renovations of existing buildings. They have much less power to force specific accessibility improvements in existing buildings not undergoing any other renovations. That said, under the ADA, businesses are required to make any needed accessibility improvements that are “readily achievable” … that is, feasible and inexpensive. This helps, but it leaves a lot of room for interpretation as to what any given business must do in their particular situation.

Second, failing to comply with accessibility standards isn’t “illegal” in the same way that speeding and robbery are. For the most part, accessibility is enforced through complaints, lawsuits, and, in really egregious cases, intervention by government agencies like state human rights commissions or the US Justice Department. You can’t call your local police to ticket an inaccessible bookstore, and even building inspectors vary widely in how much priority they put on enforcing accessibility standards.

Third, it is, in fact, usually harder and more expensive to make older and older-style buildings accessible than it is to build in accessibility form the ground up. “Old downtown” buildings from the 19th and early 20th centuries generally have narrower doorways, steps at entrances, and less roomy interiors than are standard in new buildings today. They also tend to sit on much smaller pieces of property, with less room for ramps and additions. Because these are “pre-existing” buildings, they are generally only improved when renovated, and then only marginally. Unfortunately, this means that older downtown areas are often less hospitable to disabled people than newer buildings out in the suburban “sprawl”. Yet, many lower-income disabled people live downtown, and don’t have cars or good transportation to get to the more accessible supermarkets and strip malls.

Finally, there is another factor that is powerful, but harder to quantify and define … apathy. Accessibility is still so low on peoples’ list of priorities for social and civic change that it rarely gets much attention at all. There are still business owners and managers who claim, often quite honestly, to not understand their obligations under the ADA, almost 25 years after the law was first passed. Whether this lack of profile is because people don’t care, because they are ignorant of what they can do to improve, or because disabled people aren’t organized enough in their advocacy … it’s hard to say. It’s probably a combination of all three.

There are many strategies we can all use to make accessibility a higher priority. Personally, I think the greatest long term potential lies in consumer recording of accessibility features, and lack thereof, using web-based mapping and business rating sites like AXS Map and AbleRoad. Businesses with poor accessibility need to know that they lose customers as long as they fail to act. That includes not just disabled people themselves, but also, hopefully, their families and friends.

One way or another, more of us have to speak up when we see barriers that shouldn't be there.

* Many, if not most countries also have similar accessibility standards applied locally or nationally … also with varying levels of thoroughness.

Newbie FAQs: "Disabled"

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Why do you call yourself “disabled"? Isn’t that a negative term?

This is well covered territory. If you frequent disability blogs, everyone has at least one and probably more posts about disability terminology, including me. Since this FAQ thing is meant for beginners to Disability Culture, I will try to be brief and keep the explanation simple. I will also try to emphasize my own, personal reasons for preferring “disabled”.

I prefer “disabled” because it is short, just “negative” enough to acknowledge that having disabilities isn’t a picnic, but has enough broad un-conflicted acceptance among actual disabled people that despite what the word seems to say, it really is just a convenient label now. Most of us don't hear it as an assessment of our potential as human beings.

The other reason I prefer "Disabled" is that the main alternatives are loathsome to me:

“Special needs” reminds me too much of Al Franken's Stewart Smalley skits on Saturday Night Live … “Isn’t that special?" It is also a term that is overwhelmingly championed by parents and professionals, and not by disabled people themselves.

“Differently-abled” goes too far in trying to assert that disability is no big deal. It is a big deal ... or at least it's a deal. It isn’t the biggest deal, but it has bigger implications than, say, hair color, artistic talent, or math aptitude.

“Challenged”, (physically or mentally), strikes me as too much of a conscious effort to turn disability into some sort of moral quality. It suggests that the barriers we face make us noble. Frankly, I'd rather try to get rid of the barriers than take a bow for facing them. Also, like “Differently-abled” and “Special needs”, it is a euphemism, an effort to make something good out of something really bad. It’s like saying “Number two” or “Bowel movement” instead of “Poop” or “Shit”. Disability ain’t always easy, but it’s not Shit.

“Handicapped” is just too old. To me, it’s the disability equivalent of calling a black person “colored”. It says more about the user than the people it refers to.

And now, a brief digression about “people first” language:

I used “person with a disability” for much longer than I have used “disabled person”. I still, personally, think it is a socially acceptable and appropriate term for people who have a certain kind of relationship with their disabilities. For some people, it really does make sense to think of their disability as something they have, rather than an integral part of who they are. However, I also think there are others who just don’t feel quite right separating their disabilities from themselves. My disability is woven into just about every aspect of my life. It doesn’t make sense for me to think of my disability as an isolated attribute … like a “thing” that I “have”. So, to me, both “disabled person” and “person with a disability” are fine, and I don’t have too much of an issue with people with disabilities who choose “person with a disability”.

I guess it’s hard to be brief about this. But the underlying principle is simple. Don’t try to run away from what disability is by coming up with fancy, euphemistic things to call it.

As always, I welcome comments!


Newbie FAQs: Introduction

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There’s this line of thought within Disability Culture, which says that one of the oppressions we experience is the expectation that it's always our responsibility to "educate" non disabled people ... that our first response to offensive, annoying comments or actual discrimination should always have the tone of a patient, caring teacher. How can a non-disabled person with no personal connection to disability know the right thing to do if we don’t tell them?

There are good reasons why so many of us see this as another form of oppression.

First of all, the response, “Teach me! I need to learn!” usually comes from the source of some painful encounter with ableism. Second, more often than not, the person saying this should actually know better. For example, any business owner who claims ignorance of the ADA, which will be 25 years old this July, is either grossly lazy or lying. Also, it really shouldn't take much in the way of social science or diversity training to realize customers with disabilities should be spoken to directly, not through the non-disabled person who is with them. Third ... and in all honesty this is probably the most common reason ... we just get tired of explaining the same things to people over and over again, year after year, decade after decade.

We are tired of constantly having to answer those same “Frequently Asked Questions”.

On the other hand, there is some merit in the old saying, “If you want something done right, better to do it yourself.” As sick as we are of being everyone’s unpaid disability sensitivity trainer, do we really trust others to do it for us?

As for the questions themselves, are they really things everyone should just know, instinctively? Or, are we expecting too much to come naturally to people, at least in regard to disability “awareness”?

If only there was some sort of network or communication tool we could use to answer these questions once and people could just read them. Wait a minute …

Let’s start with the questions. Here are some of the questions I hear most often from non-disabled people … and a few with disabilities, too. (Note: I will try to phrase these questions as I have heard them, sometimes using terminology I wouldn’t normally use myself).
Why do you call yourself “disabled"? Isn’t that a negative term?
Why are so many businesses and buildings still not handicap accessible? Isn’t that against the law?
What's wrong with being “inspirational”?
What’s wrong with special schools, group homes, and day care programs for the disabled?
Isn’t it unrealistic to close sheltered workshops? Most of those people will never be able to get a real job. In a workshop they’re at least busy, socializing, and making a bit of money. 
Isn’t it okay, if someone’s really severely disabled, for them to decide they don’t want to live anymore? Isn’t it all about dignity and choice?
How can it be better to place special needs kids in regular classrooms, where there’s no way they can keep up and the teachers have a hard enough time teaching all the normal kids? 
Isn’t there a lot of abuse of the term “disabled” these days?  I mean, parents getting their kids labeled so they can collect SSI, and unemployed adults getting their doctors to declare them disabled so they can collect Disability. This is a big problem for real disabled people, right?
Just between you and me, it’s different with mentally challenged people, isn’t it? I mean, they can’t be independent like you, can they? 
I broke my leg skiing last year. I had a cast for three months and had to go around on crutches. So I know what it’s like to be disabled.
If we really want city councilors to understand accessibility problems, why don't we make them spend a day in a wheelchair? That would teach them!
Over the next several weeks, I’ll try to answer each of these FAQs. I would love to see other, similar questions that you hear a lot from people who are “disability newbies”. I invite you to post them in the comments below!