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.

Doing Your Job Does Not Make You a Hero

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.

What if We Were All Cured or, Why Create Disabilities?

Hi readers,

I hope everyone had a happy and blessed Easter or Passover, and that if you haven’t had spring break yet or are in the midst of it, that’s going well, too. Since we did just have these holidays, this is going to be one of my posts that is a little more God-centered than normal. It centers on the age old question, if God can cure disabilities, why doesn’t He? More to the point, why does He allow disability, and is it for the reasons we think?

God has proven, over and over, that He can cure disabilities, and that disabilities don’t have to exist. Read the New Testament; there are several accounts in each of four Gospels of PWDs who were completely healed. So naturally many people, especially today’s Christians, ask why God doesn’t seem to do that anymore. Christians, Jews, Muslims–people of all faiths–pray that somehow, the people with disabilities among them would be “made whole.” They entreat their gods for intervention–but one specific kind of intervention. The type that cures, that ostensibly heals. And often God, or Allah, or Krishna, or whoever, says “no.”

Why? Of course, we think we know. We as humans have dreamed up several explanations. We say things like,

“God allowed my child to have a disability because my special child needed a special parent.”

“My child’s disability shows the world who God is, because my child is so compassionate/happy/selfless. She never complains. He always has a smile for somebody.”

“My child was sent to bless others/is God’s special angel.”

“Disabilities exist because there is evil and suffering in the world.”

Now, are those statements true? I don’t know. I don’t know the mind of God. What I do know is, those statements reek of ableism, no matter how well-intentioned they are. That last one in particular gets to me, because while it might be theologically accurate, it implies an individual with a disability is a personification of suffering. I mean, who came up with that? What kind of God would create someone and say, “I really don’t want to do this to you, but I have to because the world sucks?” Again, I don’t know, but I don’t think that’s how God works. God is not an ableist. Nor is He limited in power; He doesn’t have to create PWDs. Due to free will, He allows evil and suffering, but that allowance is acquiescent, not permissive. He doesn’t create PWDs just because the world sucks. So there have to be other reasons, right? Right.

I don’t know what those reasons are, and I’m not going to try to explain them. What–or Who–I do know is the person behind those reasons. For me that happens to be God the Father, God the Son (Jesus Christ) and God the Holy Spirit. So bear with me; if you have a different god, that’s fine, and I hope you’ll find some encouragement based on what I’m about to say even if it doesn’t reflect your belief system.

See, humans have gotten this whole earthly living thing mixed up, and I’m as guilty as anyone. We think because we are here, because we are the highest life form and at the top of the food chain, earthly living is about us. It’s about what we do to survive and thrive. As Solomon said, “Eat, drink, and be merry,” for tomorrow, we die. And I guess if you’re an atheist or agnostic, that works for you. Fine; live as you wish. But for those of us who claim a god, particularly the Judeo-Christian God, life is not about us. It’s about God.

That’s right. We’re here because God wanted us here, not because He had to create us. We’re here because He chose for us–every one of us–to be here in certain times and places, and that includes PWDs. Sometimes I really must struggle to remind myself of this, because I feel like a big mistake. As if God was going along fine and then some clumsy angel flipped a switch and whoopsie! I got CP. I even asked my parents one time, “Okay, so the only reason I have CP is because my heartbeat stopped during birth and the doctor had to get me out right that second. I wasn’t created like that. It wasn’t supposed to happen.”

My parents didn’t have an answer for me, and I still don’t have an answer myself. People have told me CP was God’s will, but I don’t know what He was thinking on January 7, 1986. I know He could see all, knew all, and knew I’d have CP. And I know because of that He didn’t say, “Crap, I blew it!” But would CP have happened if my heart kept beating? Would your child have Down Syndrome if you’d had him at 30, not 40? Would your child be blind if you had pushed her from the womb 15 seconds sooner? Who knows? And really–should we care? Maybe not.

Why not? Because if we, and if the universe, is all about God, He gets to say why PWDs are here. And maybe, like everything else, it’s for one big reason: so the universe and its people will know who God is.

Now, I don’t mean that in the hokey way Christians dress it up in (and other faiths too, I’m sure). I don’t care how happy and compassionate a PWD is, he or she cannot function as a 24-7 representative of God, or the universe, or whatever. But maybe, in looking at disability among all the other differences out there, among all people, we could understand God a little better. Maybe we would see a God who creates everyone with utmost care and purpose. Maybe we would finally see that disability is diversity, diversity is disability, and God says both are good. Maybe we would stop pitying and discriminating against God’s people and instead say, “That’s my brother. That’s my sister. I love them.”

People with disabilities, like TAB people, have opportunities every day to show who God is. Maybe one person does it as a missionary. Maybe one does it as a doctor, or a teacher, or a blogger, or a Wal-Mart greeter. They don’t do it just by breathing, the miracle of creation notwithstanding. They do it through life–real life, not the artificial life given to them by people who take control because their bodies work “normally.”

I don’t know why every single person, disability or no disability, is here. What I do know is, we all need the chance to say, “This is who I am, and I’m here because I was created this way. Isn’t that cool? Isn’t my God cool?”

Don’t waste your chance. Use it. You might change the whole world.

The 80-20 Rule or, When to Play the Disability Card

Happy April, readers! It’s Throwback Thursday, so to set up this post, I want to share with you a memory from one of my favorite times in my life.

It’s May of 2007, and I’m in London. My college got a grant to take one English major and one history major on a ten-day trip to London and Paris, with the theme of A Tale of Two Cities, and I was the lucky English major. On this particular morning, the history major, our mutual professor Dr. M., and I are watching the Changing of the Guard at Buckingham Palace.

Dr. M. has been a lovely chaperone thus far, making sure things are accessible and safe, and that I have what I need so I can enjoy the trip. In doing so, I can tell she’s built up some questions about my disability, but until today she doesn’t ask. Today she says,

“I’ve noticed you’re really determined to do everything everyone else is doing, and you only ask for help when you really need it, or when I kind of push you.” (True; for example, we brought a wheelchair along in case the extensive walking around London and Paris got to be too much). “How do you decide when to ask for help, or bring up your disability as a reason to do something differently, or not do something?”

And I thought, that’s a really good question. Writing this blog now, I still think so, because as we’ve discussed, people with disabilities often struggle with when to ask for help. I know I do, all the time, because I really would rather never do so. At least, not where my disability is concerned. I’m perfectly okay with saying, “Hey, my hands are full. Can you grab the door?” In school I was okay with saying, “Mr./Mrs. So-and-So, I’m not sure I understand what you just said about buildingsroman novels/why is the answer to this math problem 5.58 when I got 3.76?” But bring my disability into it, and I kind of–no, not kind of. I do feel like a doofus. As a high school junior, I once had to ask a teacher to tie my shoes. Can we say “humbling moment?”

It has taken me a long time to be comfortable asking for help in those situations, and I sometimes still fight it. People with disabilities are simultaneously taught that they need to be independent, yet need help with everything. (Yet another instance of double-talk, although it’s not always intentional). Speaking from experience, that dichotomy can cause a lot of discomfort when you legitimately need help or can’t do something. But it also allows you to think carefully about what you can do. When should you challenge yourself? When should you work, move, or participate independently? When is your disability a legitimate reason to do or not do something? When do you, or don’t you, “play that card?”

As with a lot of things, the answer is different for everybody. If you have severe disabilities, those will probably influence a lot of what you can do, and that’s fine. Yet every situation is different. If your severe disability impacts your ability to speak, it’s absolutely fine to say, “I need X agency to spend money on a speaking device.” But if your severe disability does not impact how you feed yourself, it’s not okay to take someone else’s time and ask to be fed, just because you want the service.

With milder disabilities like mine, it’s a bit trickier. If your disability is mild or invisible, you may have been taught it’s never okay to “play the card.” That’s wrong, because there are situations in which it is okay. I told Dr. M. that my personal rule is 80-20. As in, 80% of the time, I do my best to act independently, to do the things TAB people are doing, and to blend in. And usually, that works. But the other 20%, I do have to say, “I have CP and it’s going to affect this situation.” Example: Later on in our trip, we toured a historic European castle. The problem was, the castle was highly physically dangerous–stairs with no railings, slick surfaces, dark passages, etc. By that time, I had also pulled a knee muscle walking. So on the advice of Dr. M and my classmates, and for my own safety, I said, “That’s fine. You guys go; I’ll grab a bench and chill.” Did I miss touring the castle? Sure, a little bit, but I wanted to be safe. And sometimes that’s the way it is with disabilities. You choose the option that’s safest or best for you in the moment. The people around you should understand that, and if they don’t, that’s their issue, not yours.

The rule is not always 80-20. Sometimes it’s 50-50. For instance, if I go to a picnic or festival, I might be able to participate in half the games or races. And sometimes there’s not a ratio at all. But, are there instances where it is always okay to use the disability card? Yes. Some are, but are not limited to:

1. Life-threatening emergencies. For instance, if you are a PWD caught in a natural disaster, it is okay to ask for medical and other services to see to your needs first. That’s not abusing services; that’s saving your own life.

2. Non-life-threatening, but unsafe situations. See the castle example. And, I learned the hard way, if the bus has priority seating for PWDs, take it. Do not try to stand just because the bus is already crowded and you feel awkward asking somebody to give up their seat. You’ll end up in the aisle the minute the bus moves.

3. Situations in which you could do what is being asked, but are legitimately unsure you could do so successfully. For instance, when my brother and SIL were dating, they came over to play cornhole. I’d never played and gave it a shot, but found out I wasn’t good at it. So I chose to sit out because I’d rather do that than play unsuccessfully. Another example: Let’s say you have a learning disability, and your friends want to play a word or numbers game. That’s your choice–you can participate with them, or you can nicely say, “How about we do something else?” As long as you are not insisting on having your own way, or accusing people of leaving you out when that’s not their intention, you’re fine.

4. Situations in which the other person doesn’t know about your disability. This happened all the time, especially in college. Remember, there are no IEPs at the university level. Therefore, my professors didn’t always know I couldn’t write, unless they had me before. (Even then, I had some profs say, “I’m sorry; I totally forgot.”) In those cases I had to basically say, “CP, remember? But that’s okay; I’ll get someone to take dictation.”

5. Situations of blatant discrimination. Self-explanatory. Never be afraid to blow the whistle on a person or people treating you badly for a disability.

Situations in which “playing the disability card” is not okay:

1. You’re literally playing a card. As in, bringing up your disability exclusively for sympathy or to manipulate a person or situation. Not cool.

2. Situations in which you legit need services, but are abusing them. This is the kid in a wheelchair who can participate in P.E. with modifications, but flat out refuses, or accuses the teacher/coach of “making” him do what he can’t/being unreasonable. It’s the blind employee who freaks out when a colleague, with no malicious intent, says “See you later.” It’s the college student who needs extra breaks during tests, but uses them to “go to the bathroom” and stuff cheat sheets down his pants. (This last one is true. My first college job was as an assistant to the school’s Disabilities Office director. One of her colleagues at another university had that happen to him).

3. Your disability should not/does not affect the skills you need to complete a task. For instance, I have auditioned for plays before and requested a chair, since nerves sometimes affect my balance. That’s fine. What would not be fine is claiming that, because of my specific case of CP, I need a script in large print. I don’t, and if I asked for one, it might take that resource from someone who did.

4. You overplay the card. This is what would happen if, say, I went jogging with friends and not only asked them to stay off rocky trails (legit) but constantly asked them to slow down/asked them to hold my arm the whole way/asked for a break every 10 seconds (not legit).

It can be hard to determine when you really need help and when you’re fine, when your disability should and should not affect certain situations. Sometimes your disability will influence situations unexpectedly–another legitimate reason to bring it up. But remember that as long as you are congenial, and as long as you are addressing actual needs, your disability is always legitimate. No one has the right to deny you help you truly need, or to tell you you’re making stuff up when you’re not. That disability card could be the ace up your sleeve. Be careful when you use it, but never be ashamed of the fact you have it.

Blog Bonus: Are Disability Rights a Fantasy?

Ding-ding-ding! Welcome to the bonus round! It’s been awhile, so I thought you guys more than needed one. Plus, I’ve got a pressing topic that will not wait until next week.

While scrolling through Facebook a week or so ago, I came across the story of a young woman with Down Syndrome whose “dream came true” when she got to report the weather for a local news station. Of course, it was your basic inspiration porn headline, so I was hesitant about reading the article. The article itself isn’t what caught my attention, though. What caught my attention was the comments.

As you might expect, many people wrote in to show their support for this woman, which is great even if they’d taken the inspiration route. Yet others wrote in to say how awful the story was. Not because it was inspiration porn, but because it had been written at all. In their eyes, it was cruel to let this woman report the weather just because she has Down Syndrome. “She is not capable…it is cruel to tell people with disabilities they are just as capable as everyone else…what was she doing reporting the weather…she can’t even read and write.” (According to the article, she really can’t, but that’s not the point). Many of these comments were harsh, derisive, and offensive. When commenters got called on that, they came back with questions like, “Why are people so sensitive?” and, “Since when is acknowledging reality awful? This whole setup was cruel,” and the like. Basically, this story reminded me of a basic truth. Many people out there still believe disability rights are a fantasy. People with disabilities will never be normal, to pretend otherwise is cruel, and people who say otherwise are whiners.

Many of these same detractors claim PWDs should be given every chance at life, and that they deserve love and respect. Frankly, that makes me ill. I understand these people have good intentions; they don’t mean to sound prejudiced, and they probably don’t know much about disabilities to begin with. But this construct is still double-talk. It reminds me of how some slave owners of antebellum America used to talk about their slaves. “They should be treated kindly, but they are inferior to us. They should not and cannot learn. They cannot sustain bonds.” Like I said, makes me sick.

As you know from the last post, I do believe the “like everybody else” argument has a lot of flaws. It is inaccurate, and yes, at times cruel, to tell a PWD he or she can do whatever everyone else can–but not, as some people believe, because the PWD is of a different class of human. That argument is inaccurate and potentially cruel because it takes away individuality. Nobody is like everybody else, disability or not. Nobody can do every single thing another person can, disability or not. But, when you strip a person of his or her basic rights to participate in life, just because you believe “normal” people all do things the same way–that’s what’s cruel.

Do this with me–replace “disability” for a minute. What if, instead of a woman with Down Syndrome, that article had featured a black woman, or a Jewish woman, or a lesbian? Would commenters have said, “It is cruel to tell that woman she can report the weather. She’s capable of reporting the weather under ‘special’ circumstances, but she’s not capable of doing it for real. It is not hurtful or offensive to acknowledge she is different, and will never do/be X, Y, or Z.” Of course not. Number one, under those conditions, that article wouldn’t even be written. That circles back to the inspiration porn problem. But two, it’s just a prejudiced argument. It sets PWDs up as “other,” as “less,” as people who can’t do “real” things. And because of that argument, their lives and experiences continue to be artificial. Their civil rights are ignored because to many people, the rights of people with disabilities don’t exist. They are a fantasy, an idealized construct set up by a fringe group of touchy-feely, bleeding-heart advocates (like yours truly). People who persist in this line of thinking seem to forget, there used to be entire populations of Americans without disabilities who couldn’t read, write, maneuver vehicles, whatever. They went their whole lives without doing any of those things, and they largely were not judged for it. Yet, we continue to judge persons with disabilities. We continue to say things like, “How dare he or she be allowed to do X? She can’t even read and write!” (Well, until about age 5 or even beyond, neither could you, buddy. And by the way, did anyone ever try to teach her)?

When I see comments like the ones I described, and interact with people who think like this, I continue to be gobsmacked. I mean really, there’s not much else to say except, when will the double standard end? We don’t consider the rights of black or Asian people fantastical. We no longer see Jews or Muslims as less capable people. LGBT people are still struggling, but we as a society have moved to a place where equality is more the norm. People with disabilities seem to be the last group it is okay to treat as unequal, just because they were born with, or acquired, the inability to do certain things. And to me, that is a sorry, crappy excuse. I mean, how would you feel if somebody judged you solely on your inability to skydive? Your inability to carry kids to term, or have them at all? Your inability to speak Japanese? What the heck is going on here?

Disability rights are reality. Unfortunately, discrimination is too, and discrimination is still winning on a lot of fronts. Speaking from experience, it’s easy to get battle fatigue. But nothing will ever change unless you take a breather, pick up your sword, and fight on. Fight, because there is a whole population still waiting for basic human dignity.