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Archive for May, 2017

Moving in the Same Direction: Will There Ever be a Unified Disability Rights Movement?

Hello readers,

I hope everyone had a wonderful Mother’s Day Weekend. Shout-out to the moms, stepmoms, foster moms, adoptive moms, aunts, and grandmas out there: we love you every day. 🙂 And now, on to the blogosphere.

Today’s title consists of a question I asked myself recently. We know that the quest for disability rights is a quest for civil rights. We know that, as a button on my Pinterest account says, “Equal rights are not special rights.” So why don’t we see a big disability civil rights movement, like we did with the black community back in the ’50s-’70s? Why don’t we see more people proclaiming “Disabled Lives Matter?” (Actually, I kinda take that back, since that phrasing is a bit clunky. Your life is not “disabled.”) Why don’t we see more people protesting, and calling a hate crime what it is, when it’s perpetuated against people with disabilities? People with disabilities are, after all, no more or less valuable than blacks, Asians, LGBT people, Jews, Catholics, or Martians with antennae. (Not that I’ve ever met a Martian but if they exist I am sure they’d want to be counted, too).

Well, they say there are no real coincidences in life. God or some angel must’ve been leaning over my shoulder the other day, because while Web surfing, I came across a blog called Alternative Wiring that addresses this question. The author is a person with dyslexia who runs both the blog and a discussion board called Ability Chat. I’m going to provide the link at the end of this post, but for now, let’s go over some things this blogger brought up.

  • The sheer amount and scope of disabilities. Of course, there is a scope for every civil rights movement–one I wish more people paid attention to. Within the black community you have lighter-skinned people, medium-skinned people, and those with skin as dark and arrestingly beautiful as teak, oak, and chocolate. Within the Muslim community you have Sunnis, Shiites, and other groups. Within the LGBT community you have gays, lesbians, transgender people, queer and questioning people, and any combination of those, plus more. Because of that, I’m not sure I buy “scope” as a reason for there not to be a unified disability rights movement.

That said, every person with a disability is completely and utterly different. That person might be white, of Celtic heritage, like me. He or she could also be Asian, black, or biracial, and forming an identity based on that. He or she could be gay, or Buddhist, or Jewish. Even if not–even if disability was that person’s one and only “minority” characteristic–disability encompasses a huge amount of people. I am part of a community made up of people with all kinds of clinical diagnoses. Some haven’t been diagnosed yet. Some diagnose themselves but stay quiet because of feared stigma. I am part of a community with all levels of ability and disability. Other women with CP, like me, can drive a car where I can’t. I can speak, where others with CP can’t. I can perform basic hygiene and life skills when others have trouble with them. You get it. Accommodations and modifications exist, but as Alternative Wiring says, “there are no one-size fits all” solutions. That’s why you see autism movements, and CP movements, and that sort of thing.

  • Competition and infighting. This can happen, and has happened, with any group seeking more civil rights from the majority. It happens even when you’re not. Just because you’ve found your “tribe,” it doesn’t mean you agree on everything, and the same is true for the disability community.

According to Alternative Wiring, competition keeps the disability community from uniting effectively. The term “suffering olympics” is used (lowercase “o,” because it’s not a competition we should engage in). Suffering olympics are what happens when one person in a community, or facet of it, tries to one-up everybody else by claiming they need more or suffer more. As in, “Yeah, okay, your kid is ‘on the autism spectrum,’ but at least he’s verbal and smart. My kid can’t even talk or feed himself, so he’s entitled to services. You’re not.”

No. No, no, and no. That’s not how any of this works. Yes, one PWD may need “more” than you or your loved one. But that doesn’t mean his or her rights matter less, or don’t exist. It may be harder for you or your loved one to find solutions, but that doesn’t mean the whole community should give up. Think of yourselves as snowflakes–no, not entitled little brats who need “safe spaces” for everything. Snow is cold, and sticky, and unyielding. If the disability community learned to stick together and stick up for each other, we could gain more ground in civil rights. We might just stop traffic.

  • Inaccessibility. This is a biggie, and one the entire disability community should stay aware of. How did Black Lives Matter and Occupy Wall Street get the publicity they did? How does any movement get coverage? Often, it happens because people go out and protest. They circulate letters and petitions. They run for office or lobby for causes. But many times, PWDs can’t do this. Protests are often dangerous; people are knocked down, injured, pepper-sprayed and tear gassed, or even killed. Many PWDs are isolated within their homes, schools, and “special places”; they can’t circulate literature and petitions the way others can. Yes, blog posts, podcasts, etc.–those help. A lot. But the fact is, PWDs’ voices are still being stifled because the majority sees only what we cannot do. The temporarily able-bodied population assumes that unless a “perfect” solution can be found, there are no solutions. ENH, wrong! Thanks for playing, anyway. If you have a disability, it is vital to do what you can, when and where you can. If not, it’s your responsibility to awaken yourself to the civil rights movement, step up, and offer real help.

 

  • Visibility vs. invisibility. The TAB majority, and some members of the disability community, are still tied up in arguments over what is “disabled enough.” Alternative Wiring talks about kids and teens who are denied IEPs halfway through school because they are determined “not disabled enough” to need one. Students graduate high school and college with fear, not anticipation, because they aren’t sure they’ll be served properly or at all. In fact, many parents of PWDs call graduation “falling off the cliff”–and for too many, it is. It signals endless waits, dead-end jobs, group home placement whether the family wants it or not, and so much more that should *not* be happening.

On the other side of that coin, some PWDs, especially those with visible disabilities, are over-compensated. For example, a person who has autism but is high-functioning might have his or her needs completely ignored. But a person in a wheelchair might be babied and coddled over every little thing (and nobody cares whether they want/need that or not). What tends to happen then is, the TAB community decides it gets to determine whose disabilities are real or not. This feeds into the infighting mentioned above as competition for resources and attention increases. And as mentioned, it’s sometimes hard to know what is the right amount of compensation. Remember: just because you can’t see a disability doesn’t mean it isn’t there. Just because you can, does not give you a license to jump in and tell someone else what they need or want.

Should We Give Up?

No. Absolutely not. In light of these and other issues, giving up is tempting. But if other minority groups didn’t quit, neither can we. Neither should we. I believe one day, people with disabilities will be treated as total equals. I believe they will be judged on merit, not the ability to inspire. I believe they will be able to live the lives they want, not the scraps they are given. I believe they will make decisions, change policy, and raise and nurture a generation of people who will continue to affect change.

In my lifetime? I don’t know; I hope so. In your lifetime? Again, don’t know. But we can’t give up. Some people in my church/faith community claim the Apocalypse is going to happen any day now, and it might. But personally, I’d estimate we’ve got some good decades, maybe centuries, left, so let’s use them. Let’s keep talking about this. Let’s keep dismantling myths about disability and spreading the truth. Instead of saying, “I’m better because I’m more/less disabled than you,” let’s start saying, “What can we do to let the majority know we’re here, that we’re not going anywhere, and that we expect to be treated as humans?” It’s gonna take awhile, but I think it will be worth it. The more we spread the word, the quicker change will come–and stick.

Who’s with me?

 

Link to Alternative Wiring’s post on this topic: http://www.alternativewiring.com/2015/07/why-isnt-the-disability-community-more-unified/

Special Olympics: Really Special, or Segregation’s Sacred Cow?

Hello readers,

I owe myself an apology, because recently, I made a mistake.

I got one of those charity calls–you know, the ones where you subscribe to magazines in exchange for a small donation to a certain worthy cause. I normally just hang up, since at their core, these are solicitations, and I already give to a couple of charities without using the phone. But this time, the cause was Special Olympics. I felt it would be hypocritical not to donate, so I said I would, in exchange for a subscription to a magazine I actually do read and enjoy.

Then however, I ran across some research on Special Olympics that made my stomach churn, guaranteeing I won’t donate to them again. That research–namely, a 2004 study by Keith Storey and some supporting articles–led me to question what I thought I knew, and what we as society think we know, about Special Olympics.

What Makes These Olympics So Special?

When you talk to people about disability advocacy, the disability rights movement, and so forth, there are certain things you just don’t touch. Special Olympics seems to be one of these. That is, people with and without disabilities don’t question the organization or its purpose. Why? I can think of a few reasons.

(1. Special Olympics is one of the oldest pro-disability organizations in existence, having begun in 1968. (Whether it’s truly pro-disability is another issue we’ll get to in a minute).

(2. Special Olympics has affected positive change in the lives of many people with intellectual disabilities. There are testimonies to this all over television, the Internet, and other forms of media. A young man named William Matthews, who has epilepsy and an intellectual disability, can be seen on YouTube giving a TED talk on the history and benefits of this organization, and he does make a compelling case.  I went to summer camp with Special Olympics athletes, who enjoyed and treasured their experiences. Their families treasured the experiences as well.

(3. Special Olympics (allegedly) gives young people with intellectual disabilities the chance to participate in something they normally would not get to participate in.

(4. And this seems to be the biggie: Special Olympics makes everyone so happy. It’s a feel-good organization with positive goals. Special Olympics wants persons with disabilities to participate, and when they do, everyone benefits. Great, yes?

Maybe–but maybe not.

What’s Really Going on Here?

Before we go further, I have a quick disclaimer. In no way am I trying to say, “If you or someone you love has participated in Special Olympics, you are anti-disability and your experiences don’t count.” In no way am I trying to say we should shut Special Olympics down. I do not hate anyone associated with Special Olympics, and as noted, I have supported them, if naively so. This post is not about tearing anybody down–it’s about questioning what we as a society do in the efforts to build people up.

Now that we have that out of the way, let’s stop tiptoeing around the issues, because there is an issue here. Many people, myself included, are now questioning how beneficial Special Olympics actually is. It’s not really “special”; many disability advocates, and those outside advocacy, see it as a sacred cow of segregation. While not meant as such, Special Olympics keeps people with disabilities out of the mainstream athletic arena. You must have a disability to participate; if you don’t, you can’t. This deprives athletes with disabilities of the chance to compete with peers of all levels. It also reinforces the idea they can only succeed at activities designed exclusively for their “special needs.” Unintentionally, the focus shifts away from the individual, his or her success, and his or her true abilities. The focus becomes, “These people have different needs, so they must be held to different standards.” (Note here that I’m not talking about modifications–I’m talking about an entirely separate and exclusive setup).

Problems Beyond Segregation

Writers like Keith Storey and Lawrence Downes of The New York Times have pointed to segregation as a major issue, but there are several others we must examine. Many people, especially those who support Special Olympics, aren’t aware of them. Let’s take a quick look at each one now.

  • There are no winners. In Special Olympics, losses are never recorded. If someone loses a race or event, it is never announced or even mentioned. In his 2015 report on the Special Olympics World Games, Lawrence Downes revealed most events are designed so that multiple athletes can win. Medal ceremonies stretch for hours on end.

I can hear detractors now: “Are you saying you want athletes with disabilities to lose?” Well, yes, if they legitimately lost. Special Olympics is ostensibly set up so there are no losers. But athletic competition presupposes winners and losers. You’re not a bad person if you lose. It doesn’t mean you didn’t try. But if nobody keeps score, if everyone wins, there are no winners, either.

So what’s the real message here? You got it: People with disabilities shouldn’t lose/can’t handle losing. People with disabilities need to win, but we’ll do that in such a way that eliminates the spirit of athleticism. Nobody loses, but nobody wins. So the real message of Special Olympics is: people with disabilities are losers.

  • Inspiration porn abounds. I’d go so far as to call Special Olympics a hotbed, the mother of all inspiration porn avenues. For example, temporarily able-bodied people are hired to hug athletes at the finish line of every race or event. Now, I like to hug as much as the next person, but let’s be real here. If I’m tired and sweaty from putting all my effort into some athletic event, I don’t want a total stranger to hug me, pat me on the head, or say something like, “Go! Go! Good for trying!”

And yet, that’s what happens. Lawrence Downes describes the World Games medal ceremonies as “teary,” with people beaming, crying, and hugging the whole time. Athletes getting hugged by total strangers. People without disabilities applauding them for completing events designed to be much easier than they should be. No wonder people go out and ask for donations. No wonder Special Olympics is all over the media. It’s inspiration porn. The message seems to be, “If J.J. with Down Syndrome can run in a race, maybe I can become the next Wall Street tycoon! If Danielle’s intellectual disability doesn’t stop her from throwing a ball, maybe I can write a bestseller!” Cut it out, people. Cut the crap. You’re using your fellow humans, which brings me to:

  • Special Olympics is only for people with intellectual disabilities. This goes back to segregation, but in a way, it’s its own issue. I would argue that more than other PWDs, people with intellectual disabilities are heavily marginalized. These are your fellow citizens with intellect-affecting autism, Fragile X, Down Syndrome, Fetal Alcohol Effects, you name it. As William Matthews points out, these people were shut away from society for decades, even centuries. They are the ones most often hit with the R word and other slurs. They, more than other PWDs, are the ones stigmatized and seen as what other people never want to be. Special Olympics only serves them, and as we’ll see in the next point, it does not serve them well. Yes, it’s unintentional, but Special Olympics actually marginalizes PWIDs more. In fact, the images most often associated with Special Olympics play up intellectual disabilities, especially those with visible features, to increase public relations.
  • Special Olympics does not actively serve the people they claim to care about and want to include. I could spend a separate post on this point alone, but I’m going to try to condense. Special Olympics says its efforts are aimed at ending exclusion for people with disabilities, and helping them move toward better futures. That’s all well and good, but here’s the truth.
    • According to various studies done within the past decade, 90% of children and young adults with intellectual disabilities are still denied educations and basic healthcare. Many Special Olympics participants struggle with long-term and chronic health problems. While Special Olympics has a program aimed at those health problems, it is not meant to teach PWDs to take care of their own health. It is instead aimed at educating doctors who, Special Olympics implies, will almost certainly see participants as their patients one day. Message? “For this one moment, this person with a disability is an ‘athlete,’ but never forget, he or she is sick or ‘broken.'”
    • Many, many corporations donate to or “partner with” Special Olympics, but they do not hire persons with disabilities to work for them. Lawrence Downes writes the reason Special Olympics is so happy is because athletes and their families “need that moment of happiness before they go home and [become] invisible again.” At the end of the day, the vast majority of these athletes will still have no jobs, little education, little access to public life, and little understanding. They may not be sent away to draconian institutions like Willowbrook State School anymore, but they are still segregated in special schools, at home with their parents/guardians, in group homes, etc. The very TAB people who claim to love and support PWDs, especially those with intellectual disabilities, are not partnering to truly help them or provide long-term solutions. Take this with a grain of salt, because we all fall under this at times, but: those corporations? They’re full of hypocrites.
    • The people running Special Olympics, while benevolently intentioned, are hypocrites. As of 2015, only two of their board members had disabilities. Two. As in, the decision-makers are still the temporarily able-bodied. The message hasn’t changed: You are disabled. We are not. We are in control, not you. You can’t make decisions. You can’t think for yourself. Your thoughts are invalid.
  • Special Olympics does not encourage PWDs to move forward. It doesn’t encourage the face of disability and how we think about it to change. Special Olympics’ original focus was to provide athletic opportunities to people with disabilities, to get them fit, get them out in public, and make them feel like champions. On some level, they have succeeded. William Matthews and other athletes like him proudly call themselves champions, and they have a right to do that. I’m not trying to steal happiness from anyone here.

But I will challenge what Special Olympics has become all day, because it doesn’t provide any long-term solutions for people with intellectual disabilities. It puts decisions and service delivery out of PWDs’ hands. It focuses on giving people one brief, shining moment once a year or so–a “high” they can live off on the days they feel invisible.

Special Olympics does not encourage people with disabilities to keep moving forward. It doesn’t affirm their rights, or work with communities to provide real opportunities. Instead, the message is: You exist, but it’s primarily for others’ benefit. You are an inspiration, but we decide how and when you will inspire us. Special Olympics, as it now exists, is harmful to disability rights. If changes were made, maybe that wouldn’t be the case–for one thing, can we start by admitting there are winners and losers? Can we end the segregation?

Will those changes be made? I don’t know. Making them would shoot a hole in the status quo. Many people would scream over an opportunity being taken from PWDs. But really, what kind of opportunity is it? Shouldn’t we rethink what we’re doing and saying?

I don’t expect this will be my most popular post. I’m sure I’ll get at least one comment informing me I am a ____ing, ____-ety ____ asshole. But you know what? That’s fine, because I learned my lesson the hard way. I’d rather see others learn it the easy way.

Special Olympics may always exist–and to tell you the truth, I’m kind of okay with that–but not as it exists now. We’ve got to make some changes, people, starting with the way we seek to make PWDs feel “special.” They don’t want “special” anymore. It’s not 1968 anymore. It’s 2017, and I for one want revolution. I want revelations. I want real opportunities, accomplishment, and success.

Now, that’s worth carrying a torch for, wouldn’t you say?

The Right to Refuse Help: Yes, You Have It

Hello readers,

Welcome to another month at IndependenceChick’s nest. Let’s get to it.

As you know, I’m an avid reader of the Dear Prudence column on Slate.com. Recently, an advice-seeker wrote in about an encounter with a woman in a wheelchair. She had seen this woman trying to get into her vehicle and assumed she was struggling. So the letter writer proceeded to rush up to the woman and try to help her into the vehicle. Apparently, the letter writer was so insistent and borderline aggressive, she drove the woman in the wheelchair to tears. She wanted Prudence to tell her, was what she had done out of line? Shouldn’t she have been willing to help, and shouldn’t the other woman have accepted?

Well, once the stupidity stopped burning my eyes, I hopped on over to Facebook, where readers can comment on columns. I left a quick comment on the fact that this letter is why the world needs more education about people with disabilities. It occurs to me though, people with disabilities could use a refresher course on something, too. Here it is: as a person with a disability, you have the right to refuse help.

That might seem counterproductive. It’s not a popular view of PWDs, because it goes against the traditional narrative of “help the handicapped.” What we think of as common sense says, PWDs always need help, so they should always accept it gratefully. “Common sense” also says that PWDs won’t always ask for help, so the “heroic” and “able” temporarily able-bodied population must remain ready to step in. (A little reminder from the last post, TAB people: you are not Superman). Now, I’m all for common sense, but in this case, common sense isn’t what’s going on. Instead, what we have here is another benevolently meant, but harmful construct. To quote Cool Hand Luke, what we have here is a failure to communicate–more accurately, a failure to let a certain population communicate.

I will admit it–sometimes I don’t ask for help when I need it. That stems from insecurity and the desire to be independent–you know, the goal that is foisted on PWDs from day one, despite the fact they’re taught they need help with everything? My family and friends have also encouraged me to ask for help because “People feel awkward watching you struggle.” But, knowing what I know now, here’s what I wish I could say. One, my life is not always about what makes temporarily able-bodied people feel comfortable. Two and more importantly, I don’t always struggle, and even if I do, it doesn’t mean I can’t do things myself.

Like so many constructs in Disability Land, this one boggles my mind. I mean, TAB people are given the opportunity to figure things out, to modify tasks as needed, even to struggle a little. It’s actually encouraged; teachers, coaches, and mentors are always there, but they want people to succeed on their own. So once again, why are people with disabilities held to a completely different standard? And once again, why are they still maligned and accused of not being “independent” when they do request help? You can’t have it both ways, TAB world–make up your mind.

Furthermore, as I said, a person with a disability does not exist to make a TAB person comfortable, to inspire that person, or make that person feel better. Hear this: We do not exist for others’ benefit. Just like anyone, we want to positively influence others, but being alive is enough. Just because we don’t directly benefit you, does not mean we shouldn’t exist. Therefore, “Ask for help so others don’t feel awkward” is a completely fallacious statement. It’s borderline dangerous, because it contributes to casual ableism.

As a person with a disability, you have the right to ask for help and modifications. That right is discussed often; in fact, it’s law (ADA, IDEA, etc.) But what nobody’s talking about is a right that’s just as important. You have the right to refuse help. Nobody can force you to take it, and certainly nobody should force themselves on you with help, no matter how well-intentioned. Your body, your adaptive equipment, your vehicle, your life–they are yours. You decide who comes in and out, who gets access to your personal space, who gets to help, and when. You can say “no” without apologizing or feeling guilty, and no one should make you feel ungrateful for that.

Go forth and ask for help today–or not! And, a final note for the temporarily able-bodied: go forth and treat your neighbors with disabilities as neighbors today. Ask; don’t assume they always want help. That’s real help.