Abelism

My first husband, Jeff, was disabled.  I don't tell many people that, and I don't know why.  Maybe because it doesn't really matter, maybe because it wasn't the only thing that defined him, maybe because I was a little embarrassed, I don't know.

He was born with a rare form of spinal muscular atrophy called Kugelberg Welanders Disease.  His mom noticed that something was different with him from the time he was about a year old.  The things that were difficult for him to do are things that you and I take for granted everyday.  He had trouble walking, getting up from a chair, getting up from the floor, and he couldn't run.  Going upstairs was exhausting for him and took much longer for him that for you or me.

Reading the chapters in our textbook this week has brought him into my thoughts more than usual.  He was the father of my son, Sam.  When I got pregnant with Sam, I panicked.  I didn't know a whole lot about this disease, Jeff never wanted to really talk about it, so everything I learned about it was from the internet. I made an appointment with the neurologist that had last treated Jeff to ask about what I might expect with Sam.  He assured me that Sam would not be affected because the disease was an X-linked gene, which means that it would only be carried by the mother ( I think this is what he told me- it's been awhile).  But of course, I still worried.

Jeff suffered through much humiliation as a child.   He was teased, bullied, beat up, pushed down, and  taunted about the things he couldn't do.  I have tears in my eyes thinking about it.  He also suffered as an adult.  He was constantly afraid that his boss would find out that he was unable to do everything he "should" be able to do.   He hid his disease from everyone as best that he could.  He was so proud and wouldn't accept help from anyone.  He wanted to live a normal life.  He didn't not want to be treated differently and he wanted to be respected for who he was.

He suffered a lot of discrimination in his life.  And he didn't deserve any of it.  He was a hard worker.   He was always a kind person who never met a stranger and who would give you the shirt off his back.  

Of course we had our differences- hence the divorce. Because of many of the issues he had with his disease he was depressed and he was an alcoholic.  I left him because he wouldn't stop drinking. (or couldn't- I see things differently now). I never stopped loving him, even though he made me crazy.

Jeff passed away in September from complications from pneumonia. He had been in the hospital for seven months. He went home at the beginning of September and we all thought that he was going to be okay.  This was the way he wanted to go.  He didn't want to die in a hospital room.  He died in his own home, in his own bed.  He was 44.

So, when I think about disabilities, I think about Jeff and the many ways he suffered and the many things that were said to him that hurt him, the many things he tried to hide and the many things he never wanted to talk about.
But when I think about Jeff I think  about the love he had for Sam, the smile he had when he would see Sam.  I think about his love of Van Halen and his love of the movie Predator.  I think about the many friends he had that loved him and that miss him.  I think about how much Sam misses him.

His disability wasn't everything he was.