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Archive for April, 2016

Blog Bonus: Let’s Call it What it Is

Welcome to the bonus round!

If I have my Jewish holidays right, today marks the end of Passover. I hope everyone had a blessed one and was able to celebrate their spiritual and physical freedom to the fullest. I’m also guessing most of you are (figuratively) dying for a croissant or a sandwich right now. My admiration goes out to those who sacrifice carbs for a week; this bread-lovin’ gal could not do it.

Passover, of course, brings to mind the Exodus story. It’s a story told in many mediums over and over again, because it’s so valuable and epic. It’s the story of a journey of an entire nation out of oppressive, terrible slavery. Jewish or not, when most of us hear the Exodus story, we feel exWtra grateful for our freedoms. We may even say, “It’s a good thing slavery no longer exists.”

That’s a natural thought, but it’s flawed. Slavery does exist–yes, even in America, land of the free. We had it until 1865 and considered it normal, even moral. Today, the sex trafficking industry enslaves millions each day, especially children. People walk as the slaves to twisted and evil forms of religion, marriage, you name it. And yes…

Persons with disabilities are some of America’s last remaining slaves.

That’s not something I say often, because of how easy it is for people to get offended. (Honestly, sometimes I think we should all have to wear buttons proclaiming, MAD ABOUT EVERYTHING!) I also don’t say it because I often hear the argument that, “Some people with disabilities are happy to work in sheltered workshops/at menial, minimum-wage jobs.” Okay, fine. But get real.

Let’s get down to where we live. Let’s say we have two teenagers, Adam and Carly. Adam does not have a disability. He gets a job at the local market bagging groceries, for which he is paid. Carly is set up with a job bagging groceries at the same market, as part of an IEP. She is not paid, even though she does the same work as Adam. When and if this is questioned, the questioner is told, “Oh, she’s part of an outreach program/this is an IEP goal/Carly cannot handle money.”

Remember the last post, folks. Stop the sugary excuses. This is slavery. Carly is that market’s slave.

Another example: Lily and Jasmine work at the same content writing company, where the going rate is $10/hr. But because Jasmine has a physical disability, her weekly output is 50% of Lily’s. For that reason and that reason alone, Lily is paid $10. Jasmine is paid $5.

Slavery? Yes, because even though Jasmine is being paid, it is below the minimum, and based on disability. Her skills are not rewarded or even acknowledged. Actually, she’s effectively punished for being slower. As a result, if Lily works 8-10 hours a day, she pockets $100 for that day. Yes, taxes are a factor, but Lily could probably pay a bill with that money. She could take care of some groceries or otherwise provide for herself. Over time, she could get another, higher-paying job, or save up her wages for something important.

By contrast, Jasmine gets $50. She may be able to spend it on something small, but not to provide for herself significantly. Because she is likely in a “program” for “the disabled,” Jasmine may not have other job choices. She may never be trusted to handle money or able to be independent.

Last example. Vincent has a cognitive or physical disability deemed too severe for typical work. He enters a sheltered workshop. There is no minimum or maximum wage; he is paid based solely on speed and/or how many widgets he can make or boxes he can pack. If a supervisor decides a “fair” wage is $3 (four and a half dollars below minimum) then that’s what Vincent receives. His wage can change arbitrarily, withheld as punishment for slowness, or otherwise be affected. He has no choice in the jobs he does, who he does them with, or how long he will do them. He may never be able to provide for himself, nor given the chance to experience the world outside the workshop.

Slavery? Oh yeah, and it’s gross. If we have to have sheltered workshops, this is far from the way to do it.

I realize this post is probably gonna offend somebody, somewhere. Guess what? Slavery is offensive to me, especially when it comes to PWDs. They are my “people” just as the Hebrews of old were Moses’. We’ve got to call slavery what it is and stop enacting it.

How? Here are a few simple rules:

  1. Jobs for PWDs should be above minimum wage, and as skilled as possible.
  2. Jobs are based on skill, not speed (and if speed happens to be a factor, that should not be the sole determining one in wages)
  3. Employees with disabilities should have the freedom to choose other jobs when they like, and the opportunity to gain seniority and privileges
  4. The goal of every supervisor who hires a PWD should be, “Let’s help this person provide for him/herself and make it in our economy and world, no matter how tough it is.”

So the next time you see or hear an example like the ones here, call it what it is. Then, do what you can, small though it may be, to help PWDs gain all the freedom they can, at work and otherwise.

L’chaim. (To life).

The “Compassionate Can’t”: A Form of Discrimination No One Talks About

Hello readers,

I was inspired to write this post thanks to Angela Ruzicka, author of the Wendy on Wheels books. If you’re unfamiliar with this children’s series, it concerns Wendy, an adventurous ten-year-old who happens to use a wheelchair. She has friends, participates in school, and sometimes deals with discrimination from temporarily able-bodied people.

Today, Angela Ruzicka announced on Facebook that there’s going to be a new Wendy book. It’s not finished yet, but it’s called Wendy on Wheels Moves On. From what the posted preliminary sketches tell me, it concerns Wendy’s love of music and singing. The music teacher places students in certain groups, such as show choir and chorale.

Wendy is always placed in chorale, despite her desire to participate in the other groups. I don’t know, but I presume it’s because the teacher assumes she can’t participate and refuses to make modifications. Sketches show Wendy talking to her principal and writing the music teacher explaining that she feels discriminated against.

This plot hit me where it hurt, guys. I was in chorus as a student. I was allowed to participate, but never given solos or special parts. I was never allowed to do anything in the school musical except be in the chorus line because of dancing (even if some secondary parts did not require dancing, and even though the chorus line’s main function is to dance). Yet I never felt I had the power to fight back. Chorus was one of only two electives I could participate in (foreign languages was the other) and I was afraid of the controversy speaking up would cause. I was afraid of being kicked out.

Now, some people would say, “That was a long time ago, you’re a grown woman, get over it.” I don’t sit around stewing over it if that’s what they mean. I am “over it” because I know there’s nothing I can do. But I am not “over” the way the arts community discriminates against PWDs like Wendy and me. I am not “over” the compassionate discrimination our society continues to call acceptable.

What do I mean by “compassionate discrimination?” Simple–it’s what happens when a TAB person says to a person with a disability, through words or actions,

“I know you want to do this, but it’s just not possible. It’s too hard/expensive/disruptive to modify this activity. You should do X instead, where it’s easier or you’re with your own kind.” TV Tropes sometimes calls it Sorry Billy, You Just Don’t Have Legs.

Now, understand what I am not talking about. I am not talking about situations in which PWDs would be in danger, or situations where they legitimately cannot do what is required. For example, I wanted to be a policewoman in second grade (for about ten minutes). I could probably be a forensic psychologist or criminologist, but because of visual and physical issues, there is no way I’m firing a Beretta or chasing a suspect across the Golden Gate Bridge. And I am fine with that.

What I am talking about are situations in which, with or without support, a PWD could do what is required and should be given a fair chance, but isn’t because the TAB world makes excuses. And then, to twist the knife, they couch discrimination in kindness. As in, “I’m worried you can’t handle the physical demands of teaching.” “I would date you, but what can you do on a date?” “Before we enter a relationship I need to know–can you have kids/sex?”

Stop it. Just stop. This is gonna sound harsh, but at this point I don’t care. You all think you’re being kind and compassionate, but you’re not. You are bigots. Yeah, I said it. You are bigots.

The bigotry has got to stop, folks, and I mean all forms. Everything from, “Sit in the back of the bus, crip” or “Out of my way, retard” to, “Oh, honey, the penguin house doesn’t have an accessible entrance. Wait out here by the trash cans–here’s some ice cream.”

And stop making excuses. When a PWD says something is hard, we say, “Stop whining and meet this goal!” But because TAB people don’t have disabilities, they get to make all the decisions? I think not. Get off your butt and start thinking outside the box.

Let’s replace compassionate discrimination with true compassion, understanding, and interest in the wants and needs of other human beings.

The Last Generation: What If?

Hello readers,

Most of you are probably aware of Sea World’s decision to make the current generation of orcas the last one that will breed, and their decision to stop hosting their popular orca shows. News outlets explain the decision comes after “years of controversy” involving orcas in captivity and their purposes at parks like Sea World.

Now, I’m not what you’d call an environmentalist. I went to Sea World as a kid and enjoyed the Shamu show. I don’t have a brick in my toilet, I am not a vegetarian, and I only recycle when there’s a bin nearby. But I am very much against animal cruelty, so I understand the plight of the orcas and other animals that are captured for human benefit. What does this have to do with disabilities and the disability rights movement? I bet you can guess.

I’m not saying PWDs are like animals, but I do believe that’s how the temporarily able-bodied world treats them at times, often without meaning to and often in the guise of compassion. For example, deciding that a person with autism or Down Syndrome must automatically live in group housing–read, a holding pen–because you think that would be “better” and “easier” for the person, is reducing his or her capabilities to think, reason, and make decisions. Making comments like, “Children with disabilities are naturally manipulative and noncompliant,” is reducing them to humanlike creatures who operate basically on animal instincts.

And it makes me sick.

So, with the orcas in mind, I got to thinking. We have a generation of persons with disabilities in our world right now. Some of them will grow up to lead full and independent lives, but most will struggle with that, because of the way we treat disabilities. Some countries are outright abusive, and hate PWDs. Some countries try to provide services but fall woefully short of what they should actually be doing. And others fall somewhere in between–in fact, most nations do because for every compassionate individual, there is one who finds PWDs weird or says, “I’m not prejudiced, but they make me uncomfortable.”

But what if, for every country, this generation of PWDs was the last?

-The last one to be told, “You’ll never do X.”

-The last one to be sent away from families and friends to live with people they don’t know.

-The last to be identified based on a diagnosis and a set of problems.

-The last to be subdued, restrained, and ordered to comply.

-The last to be treated like property or a cash venue for Vocational Rehab, special education, and other services.

-The last to be denied responsibilities, leisure time, family, friends, and a life.

 

When you really stop and think about it, PWDs often don’t have it any better than orcas in a theme park. Yes, that’s a worst-case scenario, but it still happens, and as I have said before, once is one time too many. Yes, they are fed, they are kept clean, they are cared for…but for whose benefit? Often, it’s for the benefit of the “experts” who come to chart their progress, or the “normal” people who come to gawk at their “tricks.”

I don’t do tricks. I’m not anybody’s inspiration, if what you mean by that is, allowing myself to be written up in a newspaper just because I breathe or poop. But I can say that, and stick up for myself, because I am high-functioning. Not everybody is, and not everyone who is high-functioning actually has an outlet that allows them to express how they feel.

Let’s change that, everybody. Let’s make this generation of PWDs the Last Generation to put on shows for the temporarily able-bodied world.

 

But What if I Don’t Want a Cure?

Hello readers,

As you probably know, it’s Autism Awareness Month. We’ve covered some information about that on this blog, such as whether “awareness” is needed or warranted for autism or any disability, when it is used to take the place of acceptance. Thankfully, some of the rest of the world has caught up, pushing more for autism and other disability acceptance all the time, not just a month out of the year. However, there is always more ground to cover when it comes to the disability rights movement.

I was inspired to cover more of that ground recently, when I came across some articles discussing what “cures” for disabilities really mean. For example, below, I’m going to post a link to an article written by a man who was able to have his autism somewhat “cured” by certain treatments. This man writes the treatment ruined his marriage, because his wife suddenly had a spouse she really didn’t know.

A few weeks later, a Facebook friend and I talked about corneal transplants as a cure for blindness. She, like me, is a writer. One of her books is a middle-grade novel called See No Evil, about a teen named Stephen who is blind. She has explained on blog interviews that in her original draft, Stephen was going to have a corneal transplant. He would then experience some of the fallout that accompanies these transplants. For example, recipients often find color and sight in general overwhelming. They may struggle to get used to concepts like peripheral vision.

I got yet another example from Hallmark, via one of their Hall of Fame movies called Sweet Nothing in My Ear. It’s based on a true story and is about a deaf little boy named Adam. Adam’s mother is deaf, as are her parents. Adam’s father and paternal grandparents are hearing. Mom could hear for a short time when she was little, but has since adapted well to deaf culture and being deaf. Her dad is a big proponent of the Deaf Pride movement.

You can probably imagine what happens when Adam is offered a cochlear implant. Suddenly the family is embroiled in controversy because of the question, does giving Adam this implant imply there is something wrong with him and therefore something wrong with being deaf? Is deafness a disability, and is it an insult to call it one? Should we wait until Adam is older and can make his own choice? There are a lot of deaf vs. hearing arguments, to the point that Mom shouts through sign language, “Deaf, hearing, deaf, hearing! I’m sick of it!” And well she might be, because she gets the fact that no matter whether you can hear or not, painting a line between “us” and “them,” and making her child’s health into an issue where people feel the need to take sides, is wrong.

Now, I first watched this movie way before I knew what a disability rights movement was. Yet, it still disturbed me on a subconscious level. I discussed it with my mom, hoping she could help me sort out whether I should root for real-life treatments like cochlear implants to work, or whether people with disabilities should be left alone. We didn’t come to any solid conclusions and I recognize some people won’t. Others may choose treatments or “cures”–but it needs to be their choice.

That’s why I wrote this post today. We’ve come a long way in treating disabilities as normal but we’re far from where we should be. Why? Because you can still see media touting the message, “Cure autism,” “Pray for a cure,” “Fight for a cure.” Because you still see parents holding out hope for cures–because they think absolute curing of the disability is the only hope.

See, that’s what really gets me. We have not yet accepted that there can be hope and joy in having a disability. Does it suck sometimes? Yeah, sure–but being a temporarily able-bodied person does, too. And before you argue that, “Well, some people with disabilities are lying in bed on feeding tubes”–it only takes one car accident, buddy. One car accident, one fall off a roof, one anything, and that person you pity…is you.

If instead we accepted hope and joy as part of the disability narrative, and if we accepted people with disabilities can do things and have futures, I believe “cure” would not be part of the narrative, or if it was, not a big one. Why? Because we would be able to accept that for many PWDs, the disability is an organic part of who they are. It is not a definition or excuse for maltreatment. It is, however, meant to be seen in a positive light.

We say to ourselves, and tell our kids, all the time that the world would be boring if we were all the same. To that end, we don’t expect blacks to lighten their skin tones, or LGBT people to become straight, or Orthodox Jews not to wash meat and milk dishes in separate sinks. At least most of us don’t–those who do are likely guilty of ignorance. Yet, we say to PWDs through words and actions,

“Don’t you want to be cured?”

“Wouldn’t your life be better without ____?”

Maybe not–and maybe we need to start listening. Because when a PWD says “I don’t want a cure,” that’s not giving up. That’s confidence.