Alive and Kicking: A Reaction to Me Before You

Hello readers,

Today we honor the fallen veterans who have served our country and kept it free for almost 300 years (maybe more than that but I haven’t kept up with the math). These veterans are dead and their deaths should be respected.

However, there is a whole population of people in America who are still alive, but that America seems to think are better off dead. And personally, I’ve had it with that attitude.

Before you ask, no, I have not seen Me Before You. I intended to, because it looked as if the hero, who has a disability, was going to be represented as a real person. But then I found out he commits suicide at the end, thanks to a Buzzfeed article about the disability community’s response.

A lot of people are saying the disability community needs to get over it. They say that it’s made clear in the movie and corresponding bestseller that suicide is not a choice every PWD makes; it’s simply that one character’s decision. They say the fact that he was able to make the choice is some kind of breakthrough. And…well, if I squint I guess I can see that, but…

No, it’s not working. It’s just not.

You blew it, Hollywood–and JoJo Moyne. You had the perfect opportunity to represent a character with a disability fairly, with a real life. But you went for the angsty suicide plot. Whether you meant to or not, you once again implied that persons with disabilities are better off dead, and that disability is such a tragedy, anyone with one would/probably should kill themselves. That disgusts me for many reasons, not the least of which is the number of persons with disabilities who commit suicide every day. Why? Because of an ableist attitude that says, “We will give you a ramp and an IEP and a shower seat, but at the end of the day it’s our world, not yours. If you can’t do a job, travel, whatever, well, it’s your fault for being born like that/sustaining a disability.”

Get the French over yourselves, every single one of you. Stop exacerbating the tragedy, and ask yourselves what you can do to improve these lives you say you’d rather commit suicide than live.

A lot of members of the disability community are also upset because of the hashtag #LiveBoldly associated with the movie. I’m sure you can figure out why. But just a thought–why can people with disabilities only #liveboldly if they’re choosing not to live? Suicide isn’t a bold decision–it’s one made of desperation, often because you think, to the marrow of your being, that people are better off without you.

It’s Memorial Day, but let’s honor the dead on this day. Let’s not tell the living, “You’re worth more dead than alive” or “I’d kill myself if I were you.” To live, however you choose, doing the best you can–that is living boldly.

I don’t need a memorial, and neither does any other living PWD.

To life!

#MeBeforeAbleism

Advertisements

The Advocate’s Balancing Act

Hello readers,

Yesterday, I encountered a thought-provoking article on Facebook, courtesy of the Asperger’s/Autistic Women’s Association. It’s titled “I’m High-Functioning Autistic. Here’s What the Neurodiversity Movement Gets Wrong.”

In case you aren’t familiar with the term, “neurodiversity movement” refers to what many advocates for people with autism consider “the next step in human rights.” It is a movement that portrays autism as a normal cognitive variation with strengths and weaknesses, just like anyone else’s cognitive variations–and we all have them. Many people within the neurodiversity movement are even pushing to have autism removed from the Diagnostic and Statistical Manual of Mental Disorders.

Now, you guys know me, so you know this kind of thing makes me jump up and down, figuratively if not literally. However, author Gwendolyn Kansen raised some great points in her article about what she and others think the neurodiversity movement doesn’t yet understand about autism–what they get wrong. In a nutshell, here are a few:

  1. The neurodiversity movement seems to focus on people with autism who are the most inspirational. Often, this means high-functioning people with autism. “The neurodiversity movement doesn’t have a lot to say to lower-functioning autistics,” Kansen writes, and I believe she’s correct. The neurodiversity movement as a whole raises awareness that autism does not mean what we have for years thought it did–little to no independence or ability to socialize. That’s wonderful. Yet in doing so, the neurodiversity movement seems to have left out a whole group of people. That’s just as bad as, for instance, a Voc. Rehab service that is so busy teaching people with severe cognitive disabilities to do simple jobs, that they just about lose their minds when a client says, “Help me become a professor/engineer.”
  2. Kansen’s research indicates that over half of people with autism have an IQ below 70. They cannot live independently, not because they don’t want to but because it would be dangerous for them to do so. As much as it angers me and breaks my heart to face this, some people with autism and other disabilities cannot “give nuanced opinions” of what they think, because they can’t communicate (with the resources we have; we need to get to a place where lack of communication isn’t an issue). Some of these people will “wander off and drown” if unsupervised.
  3. Kansen knows people with autism who have “[attacked their social workers and killed their parents.”] She points out, rightly, that this is not normal behavior. It is not a natural cognitive variation when you attack or kill someone. And yes, understanding autism-motivated behavior better could help prevent this kind of thing. But, as Kansen implies, is it fair to say autism is “just” a normal variation when it can be–not always is, but can be–quite disabling and life-altering?

 

So, that got me thinking. I thought about autism and I thought about my own cerebral palsy. I thought about how angry and disheartened it makes me to hear that a high school student with a cognitive disability was placed in a job sorting items into bins–a job he may have for the rest of his life. I thought about the people close to me who say, “You need to understand that some people can’t do more than X/that some people are happy doing menial job Y.”

Honestly, sometimes I want to tell those people to shut it. I’m not the one who’s being unrealistic, they are. It is wrong to assume that just because your brain or body works differently, you should live in a group home, with somebody standing over you while you brush your teeth, and go to work cleaning up after “regular” people and sorting stuff into bins.

But then I think, what if those things are what that person needs?

Hear me clearly. I am not saying it is right to pay a PWD below the minimum, or not at all. It is wrong to give them an unskilled job when they can do more. It is wrong to place a PWD in a group home, nursing home, or sheltered workshop when they do not want it and there are other options available. It is wrong to assume that a child with severe CP or Down Syndrome or whatever would be happier in a class centered on therapy and Disney videos, than actually getting an education.

What I am saying to you is, it is just as wrong to force people into a mold of what we think is “normal.” If it has been proven that a person with autism–high- or low-functioning–can’t live alone, then we shouldn’t force him or her to do so. If a person with autism or any other disability has an IQ below 70, it is wrong to effectively say, “You have to learn what we learn, like we learn it, all the time.”

And as an advocate, finding the balance, finding what is right, is hard.

I would love it if all PWDs could live and move and be the same way temporarily able-bodied people can. I would love to see segregated workshops shut down, special ed classes retooled or gotten rid of, and all persons with disabilities able to go to Harvard and rock the world. But that may not happen. And you know what? That’s okay.

Why is it okay? Because just as not all TAB people are the same, not all persons with disabilities are the same and they don’t have to be. That person who can’t shower alone or take herself to the bathroom? She has as much right to be here and get joy out of life as a person with an IQ of 196 who studied chemistry and just happens to be blind. And, as much as it angers me and breaks my heart at times, I relearn every day that I can’t judge what a joyous life is or should be.

So where is the balance? What is right?

I don’t know, not for every person. What I do know is this:

  1. It is right to treat all people with dignity and respect.
  2. It is right to listen, or to help others communicate.
  3. It is right to acknowledge disability, but also acknowledge personhood, strength, and life. The ways in which we do that simply vary from person to person.

So no, maybe autism can’t be whittled down to a “cognitive variation.” Maybe the neurodiversity movement gets some things wrong. That’s okay. What we need to focus on is finding and achieving as much balance between ability and disability as we can, so everyone can live the lives they deserve.

 

If you’d like to read Gwendolyn Kansen’s article, go here: https://psmag.com/im-high-functioning-autistic-here-s-what-the-neurodiversity-movement-gets-wrong-b07bca1e2c86#.xl8uwaaiy

Extra, Extra, Read All About It! On Second Thought, Don’t. Please Don’t.

Hi readers,

I try not to repeat topics on this blog but sometimes I feel we need a refresher course. Today is one such time.

It happened again. It’s been a few weeks, but I kind of had to let it simmer before writing about it. Otherwise I might have exploded.

Our local news station does a segment called Person of the Week. It may be similar to one in your city or town, where the local media honors a person who gives back to others in a big way. It may be the lady who started a halfway house for addicts. It might be the guy who rescues kittens and puppies slated for euthanasia in shelters, and sees they get adopted. It might be the coach or teacher who’s been at X school for like, 20 years and influenced hundreds of students in a positive way. You know these people and the world is better because of them.

Our Person of the Week that week was a baseball coach. Great. He’s been coaching for awhile and from what I saw is darn good at it. Wonderful. He’s also described as especially compassionate. And as the newscaster expressed that, a brief shot of a player with Down Syndrome was shown.

Tweet! Flag on the play! I know, football, not baseball, but I hate sports so whatever.

I love that this coach is compassionate toward students with disabilities. I love that a student with Down Syndrome was featured in the newscast. But the way it was presented, purposely or not, I continually find exploitive in the media.

This isn’t the first time I’ve seen it happen either. May is prom season, and so a lot of girls get “prom-posals” (I feel those are ridiculous but that’s neither here nor there). May is also the season that some girls invite guys with disabilities to the prom–or guys invite girls. And because one half of that couple has a disability, the event gets written up in the paper. It’s like they’re saying, “Gasp! A disabled person is doing something normal! Someone actually had the guts and compassion to include them! Extra, extra, read all about it!”

Not to be crass here, but…gag me with a shovel.

I’m sorry. I know it’s probably a huge deal to families, friends, teachers, and whoever when a student with a disability gets invited to prom. I know being written up is an honor. I know it makes everybody feel warm and fuzzy inside, and I hope everyone has a great time at those proms. But please, please, for the love of all that is holy, stop writing people with disabilities up in the newspaper for doing what the majority of the population does every day of our lives.

I’ve said this to a lot of people, including those closest to me. Some, especially those closest to me, think I’m being mean and unfair, so I shut up. But this is a blog. Outside of my alias you don’t know me (except if you email me directly, in which case you know my real first name). So I feel safe here telling the truth which is, the people who exploit PWDs, through feel-good stories or otherwise, are the ones being mean.

Think about it, folks. I mean really, think. If you’ve got a kid or teenager at home, how would you feel if the local news crew surrounded your kid’s coach and snapped his or her picture and said, “You’re so compassionate for letting Tommy play after he lost a tooth”? If they said something like, “Despite being of mixed race/having a freckle on her nose/being the only Muslim in school, Serena was given a prom-posal?”

 

You would be absolutely SHRIEKING. You. Would. Sue. You would probably want to find the reporter responsible and shove the microphone up their butt.

So why–why oh, why–do we continually do the same thing to people with disabilities? I’m not talking about newsworthy stuff, like if a person with Down Syndrome competed in the Winter Olympic games and won gold, or if a person with cerebral palsy raised $10,000 for charity with her own tutoring business. I’m talking about using another person because you want to feel good. I’m talking about sending a message that says, “You are so far from normal, there is so little hope for you, that anything you do ‘like us’ is this amazing thing. You can have your 15 minutes of fame, but only the way we want you to have it.” It sends the overall message that at the end of the day, temporarily able-bodied people are better than PWDs. After all, they make the rules. They decide what’s newsworthy. They decide what PWDs can and can’t do.

I’m tired of letting them decide. I say it’s time for us to decide. And the first thing we need to decide is how we treat persons with disabilities. Do we continue the exploitation? Or do we give them authentic, meaningful praise in the privacy of our own circles, give them real inclusion opportunities, and make everybody feel good?

A PWD who lives a life of their choosing, who isn’t necessarily newsworthy all the time but has friends and family and a life he or she enjoys? That might be worth a report. But to all these other feel-good stories? I say, please get out of my newspaper.

Dear Church: Things the Church Should Stop Saying to PWDs

Hello readers,

You may recall that way back, I did a post called Things PWDs Are Tired of Hearing. I’ve also done posts talking about how Christians and the Christian church should treat people with disabilities, rather than doing what they’re doing, which often does not work. However, there is, I think, a separate category for things Christians should stop saying to PWDs, even and especially when those PWDs are Christians speaking to each other. What do we need to stop saying, and what do we need to say instead?

Here we go.

Dear Church,

  1. Stop telling me I’m selfish. No, you would never outright say that. But every time you say to me, “Yes, you can’t do X, but thank God for what you have, because He gave you food and clothing and a house”, that is what you say. Every time you bring up Paul’s admonition to be content, that’s what you say. I’m all for being unselfish and content, but if that means not seeking the best life I can have, to the best of my ability, then I don’t want it. If that means letting others control me, outside of God Himself, forget it. If that means pretending I don’t feel what I feel, screw it.
  2. Stop talking to me about Heaven. Yes, I am looking forward to Heaven. Yes, I believe it’s real. Yes, I believe anything there is better than what we have here and I am working on being heavenly-minded. But that is no excuse for expecting me to live a cruddy life and like it.
  3. Stop pointing me out as your “special friend” and saying how much like Jesus I am. Sure, I wanna be like Jesus but I am not Him, and I certainly am not by virtue of the fact I breathe. Just be real. Spend time with me because you want to, not because I make you feel good.
  4. Stop saying, “Things will happen when they’re supposed to.” Again, not disputing the truth of that statement. Too often though, when Christians say it to PWDs, what they really mean is, “That won’t happen for you. That’s okay, though. You were put on earth to inspire, not live life.”
  5. Stop saying you’ll pray for me… Unless you actually intend to do it, and actually intend to ask me if I still need prayer 1, 2, or 6 weeks later.
  6. Stop using God as your excuse. As in, “God has plans for you,” “God isn’t ready for you to do that yet,” or, heaven help you, “God has not led me to participate in the disability ministry.” Again, God’s not the one I’m beating up on. I’m kicking the snot out of people who could lend a hand but don’t, and hide behind the Almighty.
  7. Stop saying, Bless his/her/their heart. Hopefully, even in the Bible belt, we’re mostly over this one, but it happens. PWDs are people, not crippled lambs, despite Max Lucado’s picture book of that title. (Love Max, but if I could get my hands on him for writing a book about a crippled lamb and how inspirational creatures with disabilities are, I’d have his blessed theologian neck).
  8. Stop praying for me to be healed. I appreciate that, sorta, but…
  9. Stop telling me I don’t try hard enough. You don’t know “try” from a hole in the ground. Just because you know, or have read about, some chick with no arms who can do “more” than I can, it is not your right to tell me I don’t try. It is also not your right to tell me God will help me if I try or that He helps those who help themselves (which, by the way, is not even in the Bible–I’ve looked).
  10. Stop asking me if I want/need help. That’s great and all, but too often, you let the conversation end there. What is so intimidating about me? Why do you think you can’t know me? Why do you simultaneously put me on a par with a person whose disabilities are more severe, but then say, “You should be able to act more like me?”

 

What To Say Instead:

1. How’s life going? What’s the best thing that happened to you this week? The worst thing?

2. I know this is hard. Why don’t we figure out how to make it work?

3. Nothing. Just listen.

4. Wanna go to the mall/the movies/the coffee shop/on vacation with me and my friends? We’ll make sure you have what you need, but we can’t go without you. We’re having a trivia tournament (or whatever it is the PWD in your life loves to do).

5. Jesus sees you, loves you, and is proud of you.

6. I know the courage it took to do that, because you thought you couldn’t. Way to go!

7. I want you to have the best life possible; how can I help you do that?

8. May I pray for you today? (And then do it).

9. What do I need to know about you–besides your diagnosis?

10. You are strong, beautiful/handsome, kind, and loved. You are great the way you are.

11. I saw/heard/did X today, and I thought of you because…

12. You have the right to feel how you feel, pray what you need to, and worship as you like.

13. You were made/brought here for a purpose, and I will help you find it.

14. What ministries do you see we need/would you like us to have? Where would you like to volunteer? We will make it happen.

15. The Lord bless you and keep you. The Lord lift His face to shine upon you and give you peace.

 

Note there are five more shoulds than should nots.

 

Selah.