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.

 

Janice

The (not so) Special Mother

 

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