Saint in a Wheelchair

Sometimes I think our lives consist of one misconception after another.  This is mostly true with things people don’t have personal experience with.  For example, I have the misconception that all politicians are crooked liars who would knock their own mothers off a chair if they thought she was sitting on a dollar.  Of course, this misconception happens to be true, but still.

Nowhere is the misconception problem more prevalent than in the world of special needs.  I am always fascinated by how people view individuals with special needs.  As both a mother and a sister to people with severe disabilities, I feel I can speak with a reasonable amount of knowledge on this subject.  (Disclaimer: I have no doubt that there will be someone who will tell me that every single point I am getting ready to make is wrong, and that their experience is the exact opposite of what I am saying, and that the person they care for is an angel.  Allow me to say, in advance, good for you.  Get your own blog.)

Usually I talk about my daughter, but this post is about someone else: my sister Mindy.

That’s her, several years ago.  She has spastic Cerebral Palsy.  She was born extremely premature–today they are called “super-preemies,” but when she was born there was no such term.  She had a twin sister who lived for almost eight months in the hospital.

Everywhere we go, I run into someone who knows Mindy (and a thousand curses to all of those who ask if I am her mother.)  She also attends church, and has for most of her life, so that adds another demographic to the “people who know Mindy” population.  Everyone person who knows her loves her, and they think she is God’s angel right here on Earth, a blessing and an example of how to live a humble, accepting life.  They pet her and use words like “poor little thing.” Worse, they talk about how wonderful I am for taking care of her, how patient I am, and someone even told me there would be a jewel in my crown.

Crown?  I think I must have misplaced it.  Probably it fell off when I was banging my head against the wall.

Mindy can be a truly remarkable person.  For most of her life, she was a very calm, mild-mannered, unassuming person who smiled most of the time.  But things have changed as the years have gone by.  She’s having trouble with depression.  She takes medication for mood stabilization and to help her sleep.  She has poor impulse control and some OCD stuff.

In other words, she’s just a human being.

To assume that she has super abilities to be patient and accepting is to dehumanize her.  No one can be perfectly patient and perfectly accepting all the time.  Add into it that she has more reason than most people I know to be depressed or angry, and you see the problem.

Mindy’s body is her enemy.  Her mind is actually quite good.  I won’t say that she has the same cognitive ability as a so-called normal person, but certainly she has more than, say, members of Congress.  Anyway, her mind is pretty much okay, but her body is her prison.  It won’t move like she wants it to.  She can’t do anything for herself.  Anything that requires muscles (including eyes) is compromised.  But I’m not telling you this to get you to feel sorry for her.  There are some things I think everyone should consider, not just about Mindy, but about any special needs person you may know.

  • Mindy wanted all the same things we all did–a job, marriage, kids–just an independent life.  She is 32 years old now, and she has to cope with the fact that she can’t have those things.
  • It’s not her job to be a  blessing or set an example for you.  If she does, fine, but if she doesn’t, that’s fine too.
  • She is just like everyone else.  She has mood swings and tantrums.  She has good days and not-so-good days.  Again, I think that just means she’s human.
  • The relationship I have with Mindy is a lot less special than you probably think it is.  We are sisters.  If you have a sister, I doubt if you need any explanation.  We argue about something every single day.  She calls me some not-so-nice names very frequently.  I, having only slightly more self-control, don’t call her names, although they certainly cross my mind.  Once, when we were teenagers, we were arguing over a television program.  She turned in her power wheelchair and charged me.  She rammed my rocking chair with the force of a rampaging bull.  Shouting and tears followed.
  • She doesn’t like it when people talk to her like she is two years old, which is often.  They pet her head and get right in her face to talk.  Would you like it if I did that to you? It would be ridiculous if I did to you, wouldn’t it?  You’d think I had lost my mind.  Yet it’s okay for someone to talk to my sister that way.  Remember, she is 32-year-old woman.
  • She understands everything you are saying.   It might take her a long time to respond because it’s hard for her to get her mouth working the right way.  People will ask her a question and then keep going without waiting for the answer.  They assume she can’t talk.  In short, they overlook her.  She’s almost an inanimate object to them.
  • Lay off her wheelchair.  That chair is a part of her body.  She is in it all day, every day.  When you touch it or lean on it, it’s the same as if you were touching her person.  It’s a part of her personal space.  Yes, I lean on it and hang my purse from it, but I’m allowed.  (Maybe that’s why she calls me the bad names.  Hmmm…..)
  • Just because she is sitting down doesn’t mean she is less than you.  She’s in this world the same as the rest of us.  She deserves the same rights and considerations as all of you ambulatory folks.

I think what it boils down to is respect.  Respect her, and others, as people.  They are not saints, or angels.  Some of them might be super-sweet people who never have a bad word to say, but some of them might be short-tempered and irritable (like me.)  In short, they are varied,  because they are people, and no two people are just alike.  They want what you want–to be treated with respect and understanding.

And to watch their program on TV.  If not, they might just knock you out of your chair.

 

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34 thoughts on “Saint in a Wheelchair

  1. I agree with you on all points! Personal space is personal space regardless if that person is sitting in a wheelchair. I think the same goes for an individual who has a service dog as well. These animals are not there for “your” enjoyment. The are working dogs who provide their owner assistance and independence.

    I remember reading a story once about a family who had a special needs son. When the waitress came to take their order she looked at the son and asked him what he wanted. The mom proceeded to answer for the waitress, but she never stopped looking at the boy and waited patiently for him to answer, completely disregarding what the mom had said that he wanted.

    I’m sure that boy stopped feeling “invisible” even for only a moment.

  2. It seems that in today’s world, people try very hard to not seem judgmental or uncomfortable around others with special needs. They’re freaking out about doing the right thing, about not offending. So they don’t take the time to realize, hey, this is just another person with a different set of struggles.

    This is a well-written reminder of that, and a good illustration of what it’s like to be in the inner circle of a person with special needs.

  3. I hope it’s not selfish of me to say: Thank you for this post.

    My heart goes out to Mindy. And our management decided give an Intern with ADHD a chance of experience in our company. He is intelligent yet he is very much aware of how people look at him, what people say about him and how people treat him. He shares his pain for being in such a condition which he didn’t ask for. Nonetheless, he praise God for giving him great parents with patience who have given him as normal a life as he wanted.

  4. Very powerful message. And a very useful one, too. For the most part, people are just unsure of how to act. And when people are uncomfortable, that is when some of the most bizarre behavior known to humans can surface. Thank you for your clear and honest guide. Ellen

  5. Your opening line is so powerful, and applicable to almost every aspect of life. This is a very important post. Thank you so much for sharing!

  6. Some really great points here. And I think you’re absolutely right. We tend to either overhumanize (if that’s even a word? who knows!) or dehumanize people with special needs…and yet, they’re just people. Just like the rest of us. It’s good to remind us of that.

  7. Ah, so true! I worked in the disability field for a little while- and this assumption that all people with developmental (or cognitive) disabilities are “innocentl little angels” was definitely being challenged in my field. That being said, if I hadn’t had that experience, I would have been just as naive as many of the people who talk to your sis, I imagine.

  8. I cannot even tell you how much I love this post. My son has some pretty severe special needs that limit him both physically and cognitively. The assumptions that people make really chap my hide some days. He is allowed to have tantrums. He is allowed to have a bad day. He is allowed to get in trouble like every other 9 year old. It’s not his “syndrome”. He’s a 9 year old boy. Der. Thank you for this post. I felt it!

  9. I imagine that anyone reading this post who uses a chair would like to print it out, laminate it, and hand it to everyone they meet as they walk down the street. Maybe muttering “leave me alone, bitches” as they do so. Funny that your simple assertion “my sister is a human being and frequently acts like one” should be such a big deal…and yet it is. Because she’s your sister, she might not want to admit it, but she’s lucky to have you (and you her, except perhaps for when she tries to run you down).

  10. Great perspective. My sister and I OFTEN wonder, as does the rest of the family, what the future holds for 8 year-old Austin who can be sweet or shitty, but we don’t know if it’s the missing chromosome or just HIM. With Noah going through his bout of bullying, we worry that will happen to Austin as well. He is a person, after all, not his disability.

  11. Great post. We all need a reminder from time to time. I enjoyed your first commenter as I had the opposite experience when I worked with people who are blind. We would go to a restaurant and the waitress would direct her questions to me. I would say, they can’t see, but they can hear you. You wouldn’t believe how many times they then would turn to my friends and increase the tone of their voice, almost shout their question. I, or my friends, would say they are not deaf. People are so outside their comfort zone when coming in contact with someone who really is just ‘different.’

  12. this is a really important post to me – my sister and i are often at odds these days and reading this, i am reminded that whatever the parameters of that relationship are, we’re always sisters. she’s knocked me out of a chair before, too (admittedly, not in a wheelchair). your point about respect is so simple and yet incredibly powerful – well taken. thank you for sharing!

  13. Thank you for writing about this so honestly. I think it can be easier for people who are uncomfortable to assign saint-like qualities to people who are different. It creates a distance, or “otherness,” without seeming discriminatory. But as you said, it is dehumanizing.

  14. Oh, I loved this. So, so much. And this, especially. “To assume that she has super abilities to be patient and accepting is to dehumanize her.”
    I can relate to so much of this. When I was in my chair it used to make me absolutely crazy when people pushed it without asking. And when people crouched to talk to me inches away from my face it made me feel ‘less than’. I hated that feeling.
    Thank you for this. What a truly great and needed post!

    • I’m pleased that you like this post–it’s nice to hear a first-hand perspective of someone I don’t live with every day!

      Thanks to everyone for all the comments. I’d like to add that, for the most part, I know that most people don’t do these things to be mean or because they are intentionally trying to do the things I’ve talked about. My only hope is that I can make people a little more aware of the fact that just because a person has a disability doesn’t mean they don’t have the same experiences that everyone else does!

  15. I was in Best Buddies in college, and my buddy was in a very similar situation as Mindy.

    He had no physical problems at all. He was just a normal kid until he had a brain aneurysm in middle school during gym class. Since then he has had barely any control over his body and cannot speak.

    The worst part for him, his mother explained to me, was the fact that he knew everything that was going on, yet people treated him like a child. Yes, he needed assistance in doing practically every physical activity, but he knew everything that was being said to him, and was only held back by his body. And I knew it was true because you could see the look of recognition in his eyes when I told him a joke or when a cute girl would walk by and he would raise his eyebrows.

    He was really a cool dude.

    He eventually left Best Buddies because he didn’t fit in. He didn’t consider himself to have the same disability as all of the other buddies. Frankly, I don’t blame him.

    Anyway, great post, and tell Mindy I told her to go easy on you.

  16. What a great article, especially the part about personal space. I had never thought of a wheelchair as an extension of a person’s body, but now that you’ve explained it it makes perfect sense.

  17. Of course none of it is meant maliciously, everyone has good intentions. That’s no excuse for not educating yourself on how to behave properly around folks that have different life experiences than you do.

    “Positive stereotypes” are every bit as annoying and othering as negative ones. “Look at those talented Negroes. They sure can dance and sing! And they’re all so good at basketball!” Ugh. *headdesk*

    What drives me crazy is that most people think that you can’t hear them talking about you, when you’re right there in front of them. Wheelchairs do not make you deaf!

    • Lots of people talk right over the top of Mindy’s head. With her, it takes her a while to get her mouth working to formulate a response, so by the time she is trying to answer a questions, they’ve moved on. Or else they just assume she has no idea what they are talking about.

  18. Pingback: The Other Brother » The (not so) Special Mother

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