Thursday, February 14, 2013

Lifetime Disability vs. Acquired Disability

I had a colleague, during my teaching career, who was an African-American lady about ten years younger than I.  We went to lunch one day and she stressed the importance of teaching her son -- then two -- about the civil rights movement, which even she was too young to have lived through, much less remember.  She said her mom -- who was also an educator -- made it her business to teach Oni and her sister about "the struggles" so she would always appreciate that the opportunities she enjoyed, were not easily come by.  As a child, I learned about the Holocaust, which was still fresh in everybody's minds, especially since I was born only ten years after the end of World War II and the liberation of the Nazi concentration camps.  There were people in my neighborhood, many of whom were classmates' parents, who had numbers on their forearms from the "camps".

What does this have to do with disabilities? A lot. When I just hung out in groups of ALS patients, we all had one thing in common: the same disease.  There are different forms of ALS, sure.  Some of us lost our speech, while some of us can speak; I still have use of my hands while some patients don't, and have to use eye-gaze machines to talk, and different switches to operate their wheelchairs - like head controls or even eye controls.  I am blessed with a slow progression, while other patients' symptoms progress at a faster rate.  But we all have one fundamental thing in common: we had a life before ALS.  Although we were diagnosed at different ages, and an increasing number of young people as young as 18-30 are being diagnosed, we all had able-bodied "normal" childhoods,  and most of us had several years of adulthood as well.  Most of us dated, attended our proms, got married and had children, and had relationships with our families without thinking about how or why.  

But as I mix in the larger disabled community -- most often as a consumer board member of Concepts of Independence -- I become acquainted with people who are disabled in a hundred different ways.  The one difference that stands out is the dichotomy between those of us with acquired disabilities [like Multiple Sclerosis, ALS or SCI -- spinal chord injuries], and those with disabilities that appeared at birth [like Cerebral Palsy] or in very early childhood [various forms of Muscular Dystrophy and Polio aka Infantile Paralysis].  Some polio survivors were in iron lungs before portable ventilators were invented, and many child polio victims were abandoned by their families and left in institutions.

I met a very remarkable woman at a fundraiser last September.  She came with her son who is now in his mid-30s and was diagnosed with a form of Muscular Dystrophy at age three, when his pediatrician noticed he was clumsy and not coordinated the way he should have been at his age.  Today, this man is an attorney who works for city government, but not without a mom who fought for his rights every step of the way in a pre-ADA [Americans with Disabilities Act] world.  She would not let his elementary school "dump" him in a special education class full of students with mental disabilities and mental retardation.  He became the first student in New York City to be "mainstreamed".  He graduated college and law school.  This mother says "I only did what any mother would have done".  Newsflash: I don't think my own mother would have had the strength to be the trailblazer this mother was.  And even today, my dad says all the time to me  "You can't [do that]".

Anyway, as I said before, this woman is remarkable.  But she commented to me at one point in our conversation:  "You will never know what it's like to be a disabled child.  You are lucky to have had a life before disability".  I agree.  I will never know what it's like to be bussed to a school over an hour away from home,  in a minibus full of kids in wheelchairs who have to be dropped off in different neighborhoods,  because there is only one handicap-accessible school in a whole borough.  Then again, disabled children today will never know that, either.  The post-ADA world is much better in the way of education.  Therein lies the comparison to my African-American colleague's son.  Children today with disabilities haven't lived through "the struggles" of their predecessors. Neither have I.  I never had to deal with as many businesses and buildings that I couldn't enter because of inaccessibility; nor have I had the experience of being stuck on my block because there were no "curb cuts" or even forcibly homebound because I could not get out of my building.

Nor will I ever know what it's like to be shunned by other children, whose mommies pull them away in the playground, as if disabilities were contagious.  Not to mention that able-bodied kids are bullied every minute if they are "different" in other ways. Able-bodied children have troubles too, just different ones.  And at the last meeting I attended at Concepts, some of my fellow board members were commenting about the new director of the Mayor's Office for People with Disabilities,  saying that he wouldn't be as effective as his predecessor, because the predecessor had been blind from birth and the new man in the job, has not been disabled his whole life.  The man sitting next to me [who is disabled from birth]  then said "There's a big difference between someone who has been disabled his whole life, and someone who hasn't" and the woman sitting next to him [also disabled all her life]  nodded her head.  

Is it fair to compare situations like this?  Sometimes.  Like when I watch those infomercials from St. Jude's Children's Hospital where Marlo Thomas introduces us to babies and little children going through cancer treatments,  I think "There's nothing worse than this, especially if they die.  There is no loss worse than watching a child suffering and then burying a child".  And yes, having a disabled child is the toughest, especially before ADA.  It doesn't mean I can't be effective as a spokesperson.  And should it have been a criterion when choosing the MOPD director, that the successful candidate be disabled from birth or childhood,  in order to empathize?  

Friday, February 1, 2013

This is why I don't like to make New Year's resolutions: there are so many distractions to keep me from fulfilling said resolutions.  I know I should update more often, but then I have to manage my bills, my emails, and frequent naps.  Then there are the phone calls for doctor's appointments and prescription refills.  Not to mention the doctors' appointments themselves, especially if I have to take Access-a-Ride.  If I have an appointment in Manhattan which takes a couple of hours, I am literally out of the house for at least six hours, between the cushion I allow to arrive early at my destination in the event of delays, waiting time for my return trip, and the return trip itself -- especially during rush hour traffic, and including other pickups and dropoffs.  In theory, you would think I could use my ipad to field emails and write articles, but in reality, the wheelchair tie-downs don't keep me steady enough, and the ride is so bumpy and jumpy that I can't even read.  The only thing that works is listening to an audiobook.  I am often too tired to concentrate on even that.  When I finally get home, I am pretty wiped out and often starved and need to eat something.

New Years Eve I went to the annual get-together at my friend Nancy's house.  She has a bunny rescue out of her home in Great Neck.  Most of the people who attend are rabbit-rescue people I only see once a year, which is more often than I see most people anyway.  Nancy caters in Italian food from a great restaurant in the area, and it's a low-key evening with some really nice people.  Louise drives and she used to drop me off and pick me up, but a couple of years ago, she just started staying with me.  Now she looks forward to going because the food and company are so nice.  It takes two  to transfer me into the car however, and Diane was luckily up for the task.  So she worked that night and came with us.

The weakness on my left side has become more pronounced and my latest wheelchair modification addressed this, providing guides on either side, to force me to sit straight.  And on Thanksgiving, I rode in a car for the first time in almost 11 months.  I typically ride in a car to the Walk to Defeat ALS in late September, the Rabbit Care Conference in late October,  Thanksgiving,  Christmas and New Year's Eve.  In 2012,  my team didn't do the Walk to Defeat, we didn't go to the Rabbit Care Conference, and I didn't go anywhere for Christmas.    I feel badly about not going to my family for Christmas for the last two years, it looks like the Rabbit Care Conference is a thing of the past for me, and I don't know how much longer we will be doing the ALS Walk to Defeat.  In the best of times, people move on.  The problem with a disease like ALS [especially when there are speech issues] is the opportunities to bring new people into my life, are slim to none.  I noticed when I rode in the car Thanksgiving and New Years Eve, that I lean to the left, without the benefit of the guides I have in my wheelchair.  So I have to sit against the left end of the back seat, or devise some kind of stiff pillow or wedge to hold up my left side.