You are entering the Independence Zone!

Since you guys were so patient with my dry spell all June, I think it’s high time you got a bonus round. I decided to resurrect Dear Church. If you don’t remember, the original Dear Church was a post I wrote to the Christian church in general, pleading with them to stop saying and doing certain things about/to people with disabilities, and start doing more productive things. And since the Christian church has simultaneously done more to improve and damage the face of disability, I think we need another round. Here we go.

Dear Church,

1. Stop asking me to celebrate segregation. Many churches act excited when they get a “special needs” Sunday school class. Today, members of my church clapped and cheered upon hearing the pastor commend them for partnering with local job services. They were partnering to put on a prom for teens and adults with “special needs.” While I’m sure intentions were good, please don’t expect me to celebrate. I can’t. I won’t. It goes against every fiber of my being. Look for ways to integrate instead. Remember, Jesus was probably the biggest integrator ever to walk the planet.

2. Define “independence.” My church and others have an interesting understanding of this word. They rightly preach against independence from God–the attitude that says, “I am completely self-made. I do not need God. I can save myself.” And that’s fine–amen! Keep preaching! In our arrogant society, people need to hear it. But at the same time, be aware that some of your congregants are crying out for the chance at the kind of independence everybody takes for granted. They’re aching for the chance to stand up for themselves and make their own choices. You don’t have to say it every time. But please, delineate more clearly between the prideful attitude of the self-made person, and the human need to operate with at least some autonomy. While the Bible extols community, it doesn’t call independence sinful. Which brings me to…

3. Improve PWDs’ places in the community. So often, we are lumped in with little children and the elderly, as people who need the congregation’s care. And sometimes we do. But most of us suffer from a lack of opportunity to care for others, to do real things. We fight for places in our communities outside the church. If the church widens its understanding of what we can do, maybe that fight won’t be so hard.

4. Listen to our whole stories. Yes, disability is a big part of who I am. It has informed much of my experience, spiritual and otherwise. And yes, it’s a huge part of my testimony because God and I work through it together every single day. I am honored to share that with you and I’m sure other PWDs are, too. At the same time, we want to share parts of our testimony that may not be disability-related. For example, if I went on a mission trip to Romania to care for orphans, I’d be bursting to tell that story. I’d want to brag on God. I wouldn’t necessarily want the focus to be what I overcame to get there. And that goes for college, marriage, anything.

5. Talk about something other than my disability at coffee hour. Pretty self-explanatory, but bears repeating since church is often a place to share honestly about what’s going well or not in our lives. We unload our burdens there, as we should. Thank you for helping me carry it. Remember though, that sometimes I need a break (more on that in a later post).

6. Let us lead. Yes, PWDs can teach. We can facilitate Bible studies, coach church league teams, plan a retreat, etc. However, I’ve rarely seen a PWD in a leadership position. By letting your members with disabilities lead, you set the ultimate example of inclusion. You also send the message that like anyone else, PWDs can be divinely chosen to influence others on a large scale.

7. Ask us. Ask, “What do you need/do you need help”–yes, absolutely. But after that, ask, “Have you signed up for X yet? If you want to but have hesitated, what could we do to make it easier? Is there another activity you’d prefer?” Which brings me to…

8. Think outside the ministry box. A lot of congregations focus on a few key ministries, like sports or prayer walking. Those are great! The problem is, they often leave little room for alternatives. Personal example: I have always wanted to be on a church drama team, or get a Bible trivia team going for the older Sunday school kids. And I have had opportunities to do things like that, which I relished. But they weren’t consistent because not enough other people were interested. Pastors, leaders, don’t use that as an excuse. Don’t leave it there. Ask, “How can we generate interest? How can we accommodate X disability? How can we change what we’re doing in X ministry so it’s more inclusive?” Partner with other churches if you can; it gives everybody a chance to meet new people. In some cases, it may break down barriers (if a Catholic and Protestant church partner, for instance, some myths about both could be dispelled).

9. Talk openly about Jesus’ relationships with PWDs and what He has to say to us and for us. Now, the Bible never specifically mentions the words “autism,” “FASD,” or what have you. They didn’t have those terms and frames of reference back then. That’s fine, but here’s the thing. The church usually only talks about Jesus and disability in the context of His healing abilities. As with above: yes, you can start there. But don’t stop there. If a congregant asks you, “What would Jesus do/say about this,” do your best to give feedback. Ask yourself, “What would Jesus see if He moved among the PWDs of our world? What does He want our theology of disability to be?” There are some excellent books on this subject, by the way.

10. Pray and evangelize WITH us. Sometimes the church puts a big burden on PWDs to pray or tell the unchurched about Jesus, because we’re seen as inspirations to whom no one, not even God, would ever say no. First off, that’s totally false. And second, that’s too big a burden to carry. Yes, some of us, yours truly included, are what have been called “prayer warriors.” Some of us are gifted Gospel presenters. But no one person can take on all the responsibility for these tasks. Remember what Paul said about “one body, many parts.” Be our partners–not our helpers, but our ministry partners.

11. Teach us how to find and use our spiritual gifts. A lot of PWDs struggle with this, or think they are exempt from spiritual gifts. False again–if you are a believer in Christ, you have at least one spiritual gift. Church leaders, help your congregants with disabilities find and use theirs. If opportunities are limited, see #8.

12. Invite us and attract us. Our churches are hurting for diversity, not only in terms of disability but in terms of all kinds of backgrounds. The more vibrant, active PWDs we see in a congregation, the more eager we are to join in. Look around. How many members with disabilities do you actually have? Are the disabilities all the same? Who is being served, and who’s not (for instance, a high-functioning individual may feel unserved if all the other PWDs at church are cognitively affected. A young PWD isn’t gonna want to hang out with the old folks all the time). Treat disability as diversity, and go looking for believers with disabilities. Say, “Welcome! Come get to know God with us–and with many different people.” You’ll love the results, I promise.

Selah.

Hello readers,

Yes, it has been a while. Sometimes that happens when I run out of ideas or, as happened this time, when I’m just working through a spell of the blues. I try to ignore those, but let’s be real here. I live daily with crippling isolation and self-doubt. People who don’t know me assume I would be fine if I just took whatever random job is available, moved somewhere and took public transit, or “tried” a day program. I’m only allowed to save money and work under certain conditions, and modifications/accommodations are only available under certain conditions. It is enough to make you scream. As I’ve said during prayers, “God, I’d jump off a roof, but I can’t even get to a roof. And you know what? That’s not funny!”

But enough about that. Venting might be okay for a minute but it doesn’t get anything done, and I’ve missed my blog. More importantly, if I’m going through something like this, I’m sure thousands of other PWDs, maybe millions, are or have, too. I think today is a great day to do a review on basic human rights–which are disability rights, too.

These days, we hear a lot about disability rights. Well, maybe not a lot, which is its own issue, but more than we did a couple decades ago. We hear phrases like “all means all” promoting inclusive education around the world (way to go Australia, for recently standing up against a Federal Senator with a plan to “get rid of” the autistic students in your schools). We know about ADA, IDEA, IEPs, 504s, transition services, you name it. But really, in the day to day grind, what does the bill of disability rights actually look like? Here’s a wake-up call:

The Bill of Disability Rights as it Should Read:

  1. You have the right to a safe, clean, and loving environment.
  2. You have the right to an appropriate education.
  3. You have the right to apply for, interview for, and obtain the jobs you want. Within the workforce, you have the right to work for, apply for, and gain seniority and privileges.
  4. You have the right to hope for, expect, and build a relationship with a partner. You have the right to procreate and raise a family.
  5. You have the right to leisure opportunities of your choice.
  6. You have the right to accommodations and services as needed, when and where needed.
  7. You have the right to live without discrimination and bigotry.
  8. You have the right to be as inspirational and amazing as you want–or sit on your couch and eat Cheetos on a Saturday morning. You have the right to live your life without apology.
  9. You have the right to worship any deity you want, with or without the context of hope for healing, a cure, or a reincarnated life free from disability.
  10. You have the right to take on responsibilities, make decisions, change your mind, seek new opportunities, express emotions, and live life on your own terms.
  11. You have the right to protect yourself physically, mentally, emotionally, and spiritually. You have the right to privacy. Your body, mind, and soul belong first and foremost to you (or the deity of your choice, but hopefully that deity is also a proponent of protection as outlined above).
  12. You have the right to ask questions like “why,” “how,” and “what if.” You have the right to speak up for yourself and others, and discuss your experience. Just because you are more or less “disabled” than somebody else does not mean you don’t understand the “reality” of your own disability.

Now, you might think the reverse of this–disability rights as they exist in reality–is the exact opposite. As in, “You don’t have the right to an education because you can’t learn” or “You only have the right to an education if we say you can have it.” You might think the opposite is, “You have the right to procreate in theory but can’t really do it so we won’t talk about it.” Sometimes that’s true, but oftentimes, it’s a lot more complicated than that. And the more complicated basic human rights get, the more PWDs have to fight for them. It’s no wonder they get the blues. (At some point I may do a post about the depression and suicide rates of PWDs, but frankly, that topic is too emotional for me right now).

The truth is, the current bill of disability rights comes with lists of provisos longer than my arm. As in, you have the right to a safe, clean, loving environment, BECAUSE that’s all anybody should expect, and because that’s the easiest thing to provide. No matter how less-than-ideal that environment is, as long as you are cared for, clean, and not bleeding, you’re fine. Or how about, you have the right to apply for and get the jobs you want–if those jobs actually exist in your area, if a job coach can convince someone to consider you, and if those jobs actually work out for more than a few weeks or months? How about, you have the right to build relationships as long as there are people willing to go out of their way and be your “buddy” or “helper” first? THEN maybe you might work up to friendships and partnerships.

It’s just too much. We would never, ever do this to other human beings. They are afforded the rights we’ve talked about simply by being alive. If they’re not–if their countries are oppressive, for instance, or they’ve been abused–then the rest of the world becomes outraged. They step in for the people being denied basic rights and try to stop it. But when it comes to PWDs? Even and especially in the U.S., we say stuff like, “We’re doing the best we can; we just don’t have what you need; we can’t help you because your situation doesn’t fit the box.” Seriously, folks–if you’re not outraged, you’re not paying attention.

So to close out this little review, I’ve got some basic questions for you (see #12).

  1. Can I–can we–just get some basic human rights?
  2. Why are we casually disenfranchising our fellow humans?
  3. What is it going to take to change it? I’m one person, and one person can do a lot. But at some point 1 needs to become 25, then 50, then 100, then 1000, until somebody listens. Quite frankly, I’m a little worn out.
  4. How can we help our society see that whether or not it means to be, it’s still very much an ableist one? How will ableism end if we don’t call it what it is (more about this in a future post).

Let’s stop listing provisos and trying to make PWDs and their needs and wants fit perfectly into our molds. I’ve tried to do it to myself and I’ve watched other people do it. What tends to happen is a lot of squeezing, stretching, forcing, and groaning–and in the end something implodes or explodes. It can get pretty messy out there. We’ve acknowledged the mess, so let’s keep cleaning house.

Happy June, readers!

I hope everyone had a great Memorial Day, and took time to remember and appreciate fallen veterans as they kicked off summer with family and friends. Your kids and teens might still be in school, but summer vacation will be here in a blink. New activities will fill your schedules, and that’s great. But for people with disabilities and their families, many of those activities will likely be segregated–that is, “for the disabled only.”

Now, you all know how I feel about segregation based on disability. We’ve talked about it. But one thing we haven’t discussed, is one that occurred to me recently. Disability is the only difference that makes segregation okay. Most people don’t even call it “segregation” or “separation.” They assume that because disability = limitations, separation, segregation, and seclusion are sensible and even benevolent solutions. Yet, if the same rules applied to people of other differences and diversities, it would be called “segregation.” Advocacy groups would shriek nonstop until the segregation stopped. Once again, the double standard is mind-boggling.

I got the idea for this post after seeing a national news report about a school where students campaigned to hold a Muslims-only prom. To wit, this prom was meant only for female Muslim attendees. These students’ branch of Islam does not permit unchaperoned interaction with the opposite sex, so the girls felt they’d be left out of the prom unless they had one just for them. A lot of people commented on the story, saying the idea was ridiculous. And I have to say, I agree.

It’s not that a rationale doesn’t exist; one does. These girls are from a different culture and different religion than the majority, and some of them may feel uncomfortable attending a traditional prom. What I have a problem with, is effectively segregating these girls because of their culture and religion. In this case, are they choosing segregation? To a point, yes. But in allowing the girls to do so, the school is saying, “We would rather keep one group entirely separate than teach them, and others, how to function together. We would rather hold a prom that defeats the entire purpose of a prom, than provide alternatives, such as culturally sensitive chaperoning.” And a lot of people, non-Muslims and Muslims alike, see that message as harmful, perhaps malevolent.

Now, I am not a Muslim and I’m not from an ultra-conservative culture, so maybe I don’t understand all the ins and outs of that example. I’m not trying to be insensitive toward anyone. But I want to use the Muslim only prom example to paint a contrast. I bet you know where I’m going here.

That’s right. Contrast that with “special needs proms.” Schools all over the country hold them, rationalizing that, “Disabled students need a prom, too.” But at the same time, they’re effectively saying, “These students are too disabled, too ‘special,’ to go to prom with any students except ‘their own kind.'” Yet, nobody ever protests. Nobody ever says, “That’s segregation,” or if they do, they’re in the minority. At times, even disability advocates are persuaded to back down from that stance. Teachers, administrators, what have you, use a lot of poor rationalizing to keep the segregation going. You might hear things like, “We do this because these students have behavior issues” or, “We do this because these students have poor social skills.” Every now and then, you hear things like, “Without the special ed prom, these students would not be asked/would not get to participate.” Advocates argue for a while, but in the end, a lot of them shut up and back down. No one else sees this issue the way they do, so they figure, what’s the point?

That last rationale turns my stomach–but then, so do the other andĀ more frequent ones. Segregated dances, proms, camps, trips–they’re all presented as a way for people with disabilities to experience things everyone else gets to experience because they’re alive. But think about it. If the experience is “disabled only,” how real is it? How much authenticity is sacrificed for “issues,” real and imagined? And again–why is this okay for PWDs, but not other groups? Imagine what would happen if teachers, camp directors, etc. said, “This camp is only for black children. White families don’t let them participate in activities with their kids. Besides, “our” kids are more likely to exhibit bad behavior or use Ebonics, which keeps them from socializing properly.”

Please, please, please. Someone tell me I’m not the only one who sees the glaring flaw in that logic.

The major argument I get when presenting my case on this issue is, “But those kids and adults really are different. They need modifications to participate.” Okay. I’ll buy that. I’ve been there. I need modifications to do things, especially in summer when most popular activities are outdoors and physical. But I would be downright miserable stuck on some “outing” or in a “day care program” “for the disabled.” Why? Not because of the people themselves, but because I would feel negatively singled out. The “modifications” argument is not an argument for segregation. If anything, it’s a call for the TAB population to wake up, think about disability, and provide modifications in real, non-segregated settings. It’s an opportunity for PWDs to interact with their peers who don’t have disabilities, and to truly learn skills needed to function in a world where disability is not the majority.

If you still aren’t convinced, or if you’d like to elaborate when talking about this issue, let me wrap up with a few brief bullet points. Segregation of PWDs has been the norm for decades, nay, centuries. It is assumed that PWDs, especially those whose disabilities are severe, cannot benefit without it. But here’s a dose of reality. Here’s what segregation–because that’s what it is–teaches PWDs and their peers without disabilities:

  • Modifications are difficult or impossible to make; it’s not worth it.
  • People with disabilities are fundamentally unlike everyone else. They have no concept of what it’s like to live in a non-disabled world, and even with effort, cannot/will not learn. (This is actually what whites used to say about non-whites. Didn’t fly then, won’t fly now). This rationale, conscious or not, teaches PWDs and temporarily able-bodied people to focus on differences and “special needs,” not what makes them equal.
  • People with disabilities only belong in “disabled” settings. This one is particularly dangerous, because the “disability bubble” does not exist in every situation. I’ve read testimonials of people with disabilities who’ve been segregated in school, at leisure activities, and in the workplace their whole lives. When they do leave those settings, they report feeling lost, unimportant, and incompetent. Children who spend their school careers in segregated classrooms can’t even answer questions like, “What grade are you in?” “Special” students are often lumped together; grades and skill levels do not exist. Therefore, students don’t know where they are, academically and socially speaking. They don’t know what’s expected of them or how their peers act. Therefore, they continue to act as anomalies, which perpetuates the myth that segregation is necessary.
  • People with disabilities are scary/unrelated to anyone or anything in my world. This is perhaps the most harmful thing segregation teaches people who don’t have disabilities. I’ll admit, sometimes it is a little disconcerting to encounter a person with a severe disability, or a person whose disability is extremely obvious. But the reason it’s disconcerting is, those people are almost never seen in a non-disabled setting. If they are, aides, coaches, and caregivers often accompany them. People end up interacting with the caregiver, not the person with the disability. The PWD is assumed to be unable to interact, and the myth goes on.
  • The real world will never work for you. This is a biggie, and the myth that scared me the most growing up. That’s right; even with a mild disability, you don’t escape all the pitfalls of segregation. For a long time, I struggled with the idea that TAB people would never fully understand me or know what I needed. I wasn’t as segregated as some peers, but because segregation existed, I wondered how long it would be before it was considered an option for me. I still struggle at times with the notion that I just don’t belong in this world–and I spent most of my time in the “mainstream.” Think about how a person segregated for most or all their lives must feel.
  • Your differences are bad. Disability is just as much a part of diversity as skin color or religion, sexual or political affiliation, body type or national origin. Yet when we segregate PWDs–and only that group–we effectively say, “Your differences are too different. They aren’t worth celebrating or embracing, and neither are you. Stay over here with the other disabled people, so we can more easily deal with you.” (And that’s another thing, by the way. We’ve fooled ourselves into thinking segregation is for the benefit of PWDs, but at the end of the day, whose life is better for it? Who is actually happy? Right–not the person you segregated).

Yes, there is camaraderie in associating with people inside your group. That’s why I went to summer camp for kids with many types of disabilities as a kid. It’s why I go to conferences specifically for Christian women. It’s why I get together with fellow writers, and why I seek out people with milder disabilities. Occasionally–perhaps often–we need the unique understanding that our tribe, or members of sub-tribes, can give us like no one else can. But there is a major difference between choosing camaraderie, and being forcibly segregated. There is a difference between choosing participation in group-specific settings, and being told, “This is the place/group/activity meant for you. Stay there.”

Segregation hurts, folks. It hurt in the past, and it hurts now. And for PWDs, it doesn’t have to be as obvious as, “Sit in the back of the bus.” It can be as benevolent as, “I know you’re having trouble making friends; have you tried Best Buddies?” (Another organization, by the way, whose benevolent intentions have turned PWDs into projects).

Segregation is still a barrier. Let’s call it what it is, and after we’ve done that, let’s break it down, for good.

 

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. šŸ™‚ 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,Ā 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 beĀ 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/

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.Ā  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 asĀ 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.Ā 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?

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.

Hello readers,

Here at The Nest, we’ve talked a lot about how people with disabilities are not inspirational just because they do ordinary things (as Stella Young said, getting out of bed in the morning and remembering their own names). Fairly recently, we also talked about how the disability movement needs to stop martyring parents and caregivers. We need to stop focusing on how stressful and painful it is to be involved in a PWD’s life–because oftentimes, it isn’t. We need to stop martyring parents and caregivers for doing their jobs.

But there’s also something else we need to stop doing to parents and caregivers. They aren’t martyrs, but neither are they heroes. Yet, the traditional way of looking at disability says different. I bet you guys have seen social media posts, Pinterest pins, and general axioms that say stuff like this:

  • Special needs parents move mountains.
  • I’m an autism mom/dad. What’s your superpower?
  • ____ DISABILITY MOM (written across a superhero crest, a la Superman)
  • Brilliant, brave, determined, badass ninja: Because “special needs parent” is not a job title.
  • Special needs _____ (parents/teachers/caregivers) are heroes/my heroes

Come on. Can we cut the bull? Because that’s what this is. It’s bull. Yeah, I know; statements like these are meant to make people feel good. I get it. The question is, who feels good when they hear or see these statements? Who do they benefit–and who do they not?

You got it: the parents, caregivers, and teachers feel good. They feel wonderful, and why shouldn’t they? They’re being called heroes. They are being compared to freaking SUPERMAN (or whichever your favorite hero is). But why? You got it again: because they are doing their jobs.

I’m gonna keep this short and blunt. Parents, caregivers, teachers, aides, therapists–whatever your job title is, you do not deserve a medal, a cash bonus, or a cookie for doing it. You do not get extra credit because the person you love, care for, or work with has a disability. You do not get to paint yourself as a saint for loving that person, and the rest of the world shouldn’t, either. You are not a saint. You are not Superman or Wonder Woman. You are not a tower of strength and patience. You are a regular person doing a job.

“Hey, Chick,” you might tell me, “you’re being awfully hard on these parents and caregivers. Their jobs are hard. When was the last time you saw a parent put a diaper on a fifteen-year-old with no bladder and bowel control? Have you spent more than a minute in a special ed classroom? Where do you get off?”

Okay, I’ll answer that, because it’s a fair question. I’m not discounting that a parent, caregiver, or aide’s job is difficult at times. I’m not disputing the fact that therapists, special education teachers, whoever, have to go through more than their “general” counterparts. I’m not saying these people shouldn’t be praised. What I am saying is that to constantly praise these people for doing what millions of other parents, caregivers, and teachers do every day, is based on a lie. It sets us back in terms of disability rights and seeing PWDs as equal people.

I have read testimonials and articles that speak to this. In these testimonials, parents describe their children expressing, verbally, through writing, or otherwise, that they are confused. They wonder, why is Mom or Dad a hero for loving me? They ask themselves, why is Miss Susie from preschool or Mr. Andrews in my science class a hero for giving me an education? Adults with disabilities are asking, why is my boss considered heroic for hiring me? Am I not lovable enough, smart enough, worthy of a job, or worthy of an education?

Our mouths say yes, these people are worthy–but our actions say no. Parents seek respite care for their kids and teens, whether or not it’s appropriate, because of the “constant stress” of dealing with disability. Teachers and employers complain about the time and effort it takes to educate and hire PWDs–and that’s if those things even happen. Too many times, teachers, employers, and specialists fall back on the segregated model of disability, so that dealing with disability is easier for them. And then, consciously or not, they accept the role of saintly hero for doing it.

Guys, what are we doing? Really, honestly. WHAT are we doing?

I’ll tell you what we’re doing. We’re using the hero concept, the inspiration concept, the ____ (fill in the faulty disability construct) concept as a way to objectify PWDs for our benefit. Of course, we’d never say that and consciously we’d never do it. At least, most of us wouldn’t (and those who would need to be slapped). But that’s where we are. Anything that paints a temporarily able-bodied person who is involved in the life of a PWD in any way, as a hero, is a form of inspiration porn. It is thought pornography. It is emotional pornography. Stella Young called it “porn” because of its objectifying nature, and she nailed it.

I’ve said it before and I’ll say it again: if we don’t use a certain construct for people without disabilities, why are we using them for people with them? Teachers, would you want to be considered heroic for educating TAB children? Parents, do you want to hear, “God bless you/you’re a hero/I couldn’t do what you do” just for raising and loving a typical child? So what is going on when we do it to PWDs?

Sometimes, the actions of parents, caregivers, and other people in the lives of persons with disabilities are heroic. Most of the time though, they’re great, but ordinary. Let’s remember that and put away the capes.