The perceived "burden" of disabilities

I am always amazed when someone offers their sympathy over my disability, largely because I never really saw it as that big of an issue.  While disabilities present challenges, I truly do believe that we all face challenges, mine just get me better parking spots, which given the deep freeze we have been having, is actually kind of nice.   To be honest, if I look back over my life, the most difficult part of having the disability was people's attitudes and prejudices towards people with disabilities.  The reason I say that is for operations, there are pain killers, or as it became more difficult for me to walk longer distances, I got an electric wheelchair so I could still get around.  However, there are no adaptive devices to help with stupidity and ignorance.

A couple of stories I have seen online the last month have made me think about what really is the true "burden" of disabilities.  The first article was a story about a woman with autism who had posted a Facebook comment directed to anti-vaxxers.  Her comment was:

“It never ceases to amaze me how scared anti-vaxxers are of autism.  How they have no idea how completely ridiculous and offensive they are being I will never understand.  They rather have dead children than have children like me and that just makes me sad, especially since that fear has absolutely no basis and puts so many lives at risk.  I think about my mom and dad saying and doing the things they do and I feel very defeated and worthless. I can’t imagine how the autistic children of anti-vaxxers feel!  But, fine. If they want me to be a monster, I’ll be a monster. Rawr, anti-vaxxers. Rawr.”

She has a point.  I remember a conversation I had with Daniel, the person who used to repair my artificial leg.  He had lost his leg to cancer and I was telling him how my girlfriend at the time's uncle had gangrene in his toe and was refusing to have it amputed as he did not want to give up his toe.  Now leaving gangrene untreated can result in blood poisoning and death, and Daniel and I concluded that, while admittedly we hadn't tried the death option (although having beaten cancer 7 times Daniel had certainly come closer than I had), living as an amputee seemed like a far better alternative.  While I can appreciate it is difficult to deal with and accept the loss of even a part of a limb, is it really better to risk your life than deal with losing a part of a limb?

The other issue that made me consider the perceived burden of disabilties was the story of a couple who had a baby with Down syndrome.  A woman had given birth to a child with Down syndrome, and the hospital had given her the option whether to keep the child or have the child institutionalized.  The initial story was that the mother had wanted to give up the child and told the father that if he wanted to keep the child, she would file for divorce.  The father decided to keep the child, and was heralded as a hero.  Now admittedly, when I first read the story, I had not realized this was in Armenia, not in Canada, as in Armenia, giving up children with disabilities is common practice as there are not support systems for parents.  And since the story first surfaced, there are conflicting reports about whether or not the mother really did give the father the ultimatum of giving up the child or their marriage, or if the father just decided he was going to take the child to his native New Zealand and raise him himself.  Regardless of that, the issue I found most surprising was people's reaction to the story, with some seeing no issue with it.  One friend on Facebook commented that giving up a child at birth was no different than aborting a pregnancy and it is a parent's right if they feel they cannot raise the child, to give the child up.

Here is my issue with this mentality.  I fully support a woman's right to choose and to decide on whether or not to keep a child, either during the pregnancy or at birth.  The issue I have is when the deciding factor is whether or not the child has a disability.  What does this say about our society?  It's as if we are saying "Sorry...this one is defective.  Can I exchange it?  Are their refunds?"  And what is the time limit?  Is it like a sweater...30 days with a receipt...which I assume would be the umbilical cord?  When I challenged my friend on this statement, his comment was there is no limit and at any time people have the right to give up their parenting responsibilities, which brought me to 2 conclusion: 1) Perhaps this friend should not have children, as I can imagine the first time the kid doesn't eat his or her vegetables, he is running for the door, and 2) Maybe this explains why divorce is so common.  If things get difficult, run the other way.  (That may be why I have to face my challenges...I can't run...but I digress.)  While I recognize there are challenges to raising a child with special needs, if our solution to facing challenges is to walk away, what does that say about us?  What happens if, heaven forbid, our child gets sick later in life?  What is that cut-off point where we say ok I am in for the long haul?

The other response I found interesting was a comment on a Huffington Post Canada article about the story.  A woman commented why are we so quick to judge the mother or Armenia, as it was not that long ago that people with disabilities were institutionalized in Canada.  Seriously?  By using that logic, it is ok to mistreat women, first nations or minorities because hey, we used to do that.  Progress as a society means that we have moved past mistakes of the past, and we should strive to continue progressing, and encourage other countries to progress as well.  (NOTE: Yes I realize we still have work to do on women, first nations and minorities right, but I believe we are sophisticated enough that we can call BS on all forms of oppression and discrimination at the same time, because wrong is wrong.)

What I would suggest is that the burden of disabilities is society ourselves, but the good news is I would suggest there is a tool to overcome ignorance...and that is education.  For those out there with loved ones with a disability, or if you yourself have a disability, speak up.  Do not accept people's preconceived notions of what people with disabilities can do, and do not let others define your future or your loved one's future, for allowing that to happen would be a true burden.