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Archive for October, 2016

Why Just One? Autism and Other Acceptances

Hello again, readers!

It feels like I haven’t written anything for myself in ages. Today though, I finally have a free and non-exhausted minute, so here we go.

Even when I’m not on this blog, I’m thinking about disability advocacy, awareness, and acceptance. This is no truer than on my Pinterest account. I used to not use Pinterest very much, but after my recent speakers’ conference a faculty member suggested I create a speaking/writing ministry board. At the time I already had several boards, and since then my use of the application has exploded. One of my boards, entitled The Wonderful World of DisABILIITY (written like that on purpose) is about disability, awareness, acceptance, and rights.

I’ve noticed something funny during my pinning frenzies, though. Most of the pins that speak to disability acceptance, as opposed to awareness, are about autism.

Now, those pins are great and I have thousands of them (literally, the board is over 1000 pins). They express the sentiments that:

-Autistic children grow up to be autistic adults and should not be dismissed.

-Autistic people have the right to live their own lives, stim, and do whatever it takes to cope with the world around them. Therapies aimed at “controlling their behavior” are not helpful, and interventions such as shock therapy are abusive (yes, this happens).

-Autistic people have the right to exist, period. You would be flabbergasted–or maybe not–at the number of people out there who believe people with autism should be institutionalized, sterilized, and even killed, through abortion or otherwise. You would be gobsmacked–I know I was–at the number of parents and family members who not only kill their autistic children but are backhandedly applauded for it.

-Autism does not look the same for all people. It is not a straight line. It is not a thermometer in which “more autism” = bad and “less” = good. Functioning labels are bull.

-Autistic people are productive, bright, and valuable people. Their sole purpose is not inspiration.

-Rather than hoping and praying for autism cures, we should be working together to cure ignorance.

 

I agree with and fully support these and other messages (for example, I now fully support the boycott of Autism Speaks). However, when I looked for similar pins about other disabilities, I found very few. For example, typing in “cerebral palsy acceptance” led me to pins and statements about hope for a cure, wearing green for the people you love, and fighting against CP. I even found one that said, “All I want for Christmas is a cure” (and did I mention, I’ve seen that before in other places? It’s so schmaltzy).

Now of course, there are generalized statements about disability acceptance out there, and accepting one often–should always–mean that you accept the others. But for disabilities other than autism, most of what I saw concerned awareness, not acceptance.

What’s the Difference?

The difference is fairly simple. Awareness, of course, means to be aware of something. For example, I am aware that I need and want to lose weight. I am aware that I have deadlines to meet. I am aware that while I am a cat person, the majority of people I know prefer dogs.

I can be aware of these things, but not accept them. If I continue to eat sweets and carbs all the time, I will not have accepted that my body needs routine maintenance. If I ignore my deadlines and get in trouble at work, I have not accepted them, and the responsibility that goes with them. If I tell people who like dogs they are stupid, I do not accept their pet choices. (I have done a lot of teasing about that last one, but the canine-loving hordes tease me right back. We’ve reached mutual tolerance, I guess).

The same is true for cerebral palsy, or fragile X syndrome, or blindness, or any disability. You are aware of it when you acknowledge, “Yes, this person has a disability and needs modifications.” You are aware when you make those modifications. You show awareness when you invite a PWD out with you, and make the effort to go to activities he or she can do.

However, this does not equal acceptance. Far too many people are still grumbling about modifications or finding ways around them, even skirting federal law. Too many teachers, coaches, activity coordinators, and church administrators are saying things like, “Yes, Kelly can be in our environment, but there’s not much for her to do here. Kelly, why don’t you sit and watch/be scorekeeper?” (Side note: I spent most gym classes being scorekeeper, and I was horrifically bored).

Acceptance happens when you say, “Yes, Kelly has a disability, and that’s a good and natural thing. It’s part of her. It’s part of diversity at large. When we do something Kelly can’t, we work to provide alternatives. We listen to what she needs and wants.”

I am thrilled that acceptance is being increasingly advocated for autism. Goodness knows the autistic community could do with that, after all the harmful messages they’ve gotten over the years. Remember that robotic-voiced “I Am Autism” infomercial? I mean, really. Forget about monsters under the bed, Mom and Dad. You want your kids to have nightmares? Make them listen to that voice! *Shudder*.

But while we advocate for autism acceptance, why are we still looking at CP, Down Syndrome, and others, and saying, “Fight against it. Pray for a cure. Stay informed–get prenatal testing.” (Why, so you’ll have an “out” if people ask you why you aborted? So you can make sure your next children don’t get this “horrible” disability)?

Look, I get it. I get what it means to fight against disability because I’ve done it for 30 years. If you have no gumption or fight in you, life with a disability will be that much harder. But as I am constantly learning, disability is not the real problem, and cures won’t fix the real problem. The real problems are ignorance, misinformation, and yes, hate. Yes, folks, there are people out there–even people working for “humanitarian” organizations like Autism Speaks–who outright hate people with disabilities. We are not exempt.

Why are we only accepting one disability? To me, that sounds about as boring as only eating one kind of candy on Halloween. Let’s accept them all.

Mo’ Money, Mo’ Problems, or, Quit Throwing Money At It!

Hello and happy October, readers!

Money makes the world go ’round, whether we like it or not. I can’t find the book I’ve been looking for since September 20? I have to pay to order it. I want a tall salted caramel hot chocolate? There goes part of a Starbucks gift card. That houndstooth sweater in Belk’s says, “May I come home with you?” Yes, you may–when you get marked down. Sometimes money drives me so crazy I could scream, and that’s especially true when disability is involved.

Money is a problem everywhere. Yet in Disability World, it seems money is an even hungrier, greedier driving force than usual. For example, I got really discouraged last night while reading a Disability Scoop article about Vocational Rehab services. By law, Vocational Rehab must give a PWD employment options within 90 days of their qualifying for those services. However, many people go unserved for a year or more. I can tell you from painful experience that:

-Their cases get closed

-Counselors completely ignore them

-If jobs are suggested or set up, those jobs are often totally inappropriate

-Many people who use VR, yours truly included, are lied to. To their faces. They are told they don’t qualify for thus and such service or modification when in fact they do. Because of one such lie, I have mountains of student debt I never should have incurred.

-Vocational Rehab counselors do not listen to their clients. In the article I referenced, one mother said her son wanted to go to community college after high school. But VR, whose job it is to help persons with disabilities get educations and employment, would not sign off on his desire. Boom–no transportation, no university modifications, no nothing. Nada, zippo, zilch.

The reason for all this? Constantly, it comes down to money or, as interviewees said, “Funding, funding, funding.”

It’s not just Vocational Rehab, either. Disability services have taken major hits across the board. Therefore, instead of fighting less, advocating less, people with disabilities and their loved ones are having to fight *harder* for basic services and basic rights. You think the Civil Rights Movement ended in the ’60s? Wake up and smell the incense, pal. We’re here, we want our voices heard and our needs met–but we are tired of begging.

You’ll notice, however, that the title of this post is, Quit Throwing Money At It. There’s a reason for that. I’m not suggesting these services don’t need funding. What I am suggesting is that these services, and/or the way we’re implementing them, need to be changed. I am also suggesting that to make sure PWDs have their needs met and enjoy basic rights, we need to stop thinking of money as the ultimate solution.

I mean, think about it. How much does your workplace, your charity group, or your place of worship focus on people with disabilities and their needs? Not very much, I would guess. And when they do, what are they asking for? Right–donations. As in, “Please try our strawberry cookies–$1 from each cookie goes to fund job training for the disabled.”

“Please give–your donations will fund a ramp/automatic door/curb cut for the disabled.” (Why just “the disabled”? Who’s really donating, and how much? Why just one accessible entrance)?

“We’re cutting our special class for disabled Sunday school attendees because there’s not enough in the budget/God wants us to do something else with the money.” (One, do you really need a segregated class? And two, GOD HELP YOU if you use Him as an excuse for a service cut. Yes, I disagree with how a lot of these services are implemented–more on that in a moment. But if you’re going to use them, and if it’s the only option people with disabilities around you have, then don’t leave those people high and dry).

“Your disability is ‘less significant’ than that person’s, so we cannot serve you because it’s not in the budget. You need to go on our waiting list.” (And you need to go check out what your budget is being spent on).

In other words guys, what we have here is mo’ money, mo’ problems. When a need for persons with disabilities comes up, the knee-jerk reaction is to throw money at it. The problem there is, nobody really knows how that money gets spent. The powers that be are rarely if ever held accountable. Services and modifications are misused–to segregate and separate (remember that “for the disabled/for our disabled clients/for our disabled congregants” thing)? Services are streamlined or eliminated because “there is no money,” but where did it go? Money doesn’t grow on trees but neither does it grow legs and walk away.

What Should We Do Instead?

Money is always going to be part of providing disability services, or any service. That’s just the way society works. But instead of making it the primary solution, I would like to suggest that we:

-Work together as communities. Stop seeing PWDs as that tiny population that is constantly asking for help. Don’t take up “disabled donations.” Instead, if that ramp needs to be built, surely a construction team or a carpentry class from the high school or community college can take some afternoons to do it–and do a good job. Instead of pushing for more VR funding, start listening to PWDs transitioning out of high school. What jobs or university tracks interest them? How can you make it happen? Will scholarships offset financial concerns (yes, students with disabilities can get scholarships). If you have to get involved with VR or another “job service,” do your research first. If you find you’re being lied to, don’t let that slip away. Hold people accountable. Say, “This is your job. Do it.”

-Rethink the services themselves. Are they segregated? Do they send any kind of message that PWDs are “less than”? Do you need that service as it currently exists? For instance, let’s go back to that Sunday school class for congregants with disabilities. Yes, if you already have one, it is unacceptable to just slash it from the budget out of nowhere. But before you throw any more cash at the existing class, think. What message is it sending for congregants with disabilities to be shuffled off into their own classroom, their own version of church? Would they learn better and enjoy church more in an integrated environment? Can you train congregants so they know how, when, and if to assist these members?

-See the people in front of you. They don’t want cash thrown at their problems (and I speak from experience. I’m pretty tired of hearing, “Yes, we’ll do that when we get more money.”) They want you to come alongside them and help them live the lives they want, need, and deserve. So instead of taking up donations, encouraging people to give through a website, or something else, try this:

  • Integrate activities. Make spending time with people who have disabilities a fun, rewarding, and natural thing to do (more on that in a future post).
  • Ask PWDs what they physically need, *right now*. Does a person in your neighborhood need transportation? Does he or she get transportation, but only to doctor or therapy appointments? Pool community resources. Who has a working vehicle and is willing to take time, or make time, to meet this need? Is a PWD in your life caught in a hard place, struggling because his or her SSI won’t cover meds and groceries? Take their grocery list, buy the groceries, and deliver them–whether that person can pay you or not.
  • Tell businesses the truth about hiring PWDs. (The truth is, it’s a highly positive move that encourages inclusion and diversity). Show local business owners your research. Recommend people, using positive language. For example, don’t say, “Peter would be great at this, but be warned, he has cerebral palsy.” Say, “Peter has the exact skill set you need. He does X, Y, and Z. He needs help with A and B but you can easily make those modifications. Here’s how…”
  • Rely on local resources, not special programs or government services. Trust me, if you wait for the government’s help you’ll end up like a skeleton on one of those Facebook memes. Your school doesn’t offer special education, or offers inappropriate services? Go to your principal, school board, or superintendent to discuss inclusion, revamping, or even setting up an integrated charter school. A high school senior with a disability wants to go to college? Meet with his or her parents to discuss transportation and care needs. Make it happen, within the community. For example, does that college student really need an aide from yet another program? Can peers fill that role? If nursing care is needed, can a local nurse fill that role, instead of a government worker with an impossible caseload?
  • Spend time with PWDs–real time, not some monthly “buddy date.” Talk to them. Learn their experiences. Learn what they need that they’re not getting, and then respond to it.
  • Sometimes, you will have to collect money for something. A power wheelchair, for instance, can cost about a thousand dollars or more. But in those cases, the effort should not be confined to one set of donations. The focus should not be, “Let’s get little Carson a wheelchair so he can move.” Instead, get people excited about their contribution. Tell how that power wheelchair benefits not only the person who needs it, but the entire community. As in, if Carson gets that power wheelchair, he’ll be able to move more independently. We will see more of him and get to know him better, and in so doing we’ll get to know other people, too. Treat disability and its accoutrements, such as wheelchairs, like a natural part of diversity, not some “special” tool a “disadvantaged” person needs to live.

Money makes the world go ’round, but for too many PWDs it is a stumbling block. It is also a stumbling block to the creation of community spirit, and real lives for persons with disabilities. After all, why revamp our services when there are government agencies for that?

Yes, there are. And the government may help. Someday. If the person in your life is lucky. If his or her disability is deemed “significant enough.” But that person doesn’t have forever and neither do you. Let’s put our wallets away for a moment and look at some alternatives.