I am officially out of the holiday season blues. A ski trip to Vermont with my son was the perfect antidote to my depressed mood and the commercialization of Christmas season. Our trip was interesting and highlighted why I love Vermont, skiing, and my son. We skied Sunday in spite of a questionable weather. Sunday morning could lead anyone to question my judgement. We woke up early and drove through rain, heavy rain, to Sugarbush ski resort. When we arrived it was pouring outside. My son thought I was nuts and when we got to the Vermont Adaptive office I was the only student that did not cancel. I was not a popular guy! When my instructor arrived she looked like she just got out of bed and said "I knew you would not cancel". I felt bad as she had to get out of bed on a rotten day. But the skies parted, well sort of, and the conditions were very wet but acceptable. All day the instructor pushed me hard and forced me to ski on intermediate terrain. I like this hard ass approach and for the first day of the season I did well. But the best was yet to come. On Monday the rain turned into snow and over the course of the day almost a foot of snow fell. The conditions improved with each and every run. And an amazing thing happened. Everything I had been told for the last few ski seasons suddenly clicked in my head. I stopped leaning my head into the hill, I was not hammering my right turns, I was looking down hill, I was turning instead of traversing, my riggers were in the correct position, and I was going fast. I am not sure who was happier me or my instructor. But it was my son that made me think and laugh with delight. He skied with us toward the end of the morning and he was full of praise. He said "Dad, that was amazing, it was like legit skiing. You went from the speed of a bike to the international space station". Let me tell you it is hard, almost impossible really, for a parent to impress their seventeen year old son.
We only skied half a day on Monday and drove home afterwards. The drive was very long and gave me a lot of time to think thanks to the fact my son ignored me almost all the way home. While I could rail against the social isolation my son's ipod creates, I valued the quiet drive and was retrospective. My son will be going to college next fall and I have been thinking about my experience as a parent. I thought about the things I have done right, regretted the mistakes I have made, and compared my parenting skills with those of my parents. While measuring up to my parents is impossible, I think I have done a good job raising my son. We are very close, or as close as a parent can be to a teenager bent on independence. Aside from the usual ups and downs all parents and children experience, the custody case I wrote about in my last post had me thinking about the impact my disability has had on my son. This is not the first or last time I have thought about this. My disability is far too visible for others to ignore and we have been born the brunt of intrusive stares and unwanted and rude comments. Like it or not, he is very well aware that being disabled in American society carries great stigma. Thankfully, like me, he forcefully rejects that stigma. And like me when the issue of disability comes up he advocates on behalf of all people with a disability. At school he points out violations of the ADA to teachers and administrators and always frames disability rights as civil rights. I have not pushed or thrust my ideas upon him. I worried about this as the fight for equality is not his fight but mine. Yet he has taken up the mantle of equality for all that few if any teenagers I know have. He has also embraced a radical ideology that I hope will last. The colleges he applied to are all hippie schools with a strong radical bent. These thoughts went through my mind on the drive home from Vermont and it dawned on me that my disability has been a positive influence on his life and my parenting skills. My son is out going, always the first to defend the rights of others, is never discriminatory, and accepting of all others. How did he come to be like this? Surely encountering discrimination head on for much of his life was a major variable. He has seen me needlessly stigmatized by strangers, locked out of routine interaction via social and architectural barriers, and treated as less than human. At a fundamental level he has always known this was wrong and as he has gotten older become more vocal about it. This vocalization has taken many forms. For instance, he is decidedly unhappy that as a teenage he does not share the same rights as an adult. He often asks me why is it okay for him to join the military, die for his country, have sex, father a child but cannot buy a beer or rent a car.
In thinking about being a parent with a disability, in some ways I consider it to be an advantage. My son understands that the world is full of gray areas and answers to seemingly simple questions are not black and white. He understands what the law states and reality are two very different things. He understands in a visceral way that world is not fair, the disenfranchised are most likely to get screwed, and he does like this one bit. He understands there is power in solidarity and thinks people with a disability need a Martin Luther King type leader to rally around. He expects the world to be a just place yet knows this is an ideal we Americans have not yet achieved. He knows the problems I encounter are almost entirely social rather than physical and though he cannot articulate it knows the difference between a medical and social model of disability. Does all this make him unusual? Yes and no. Yes, in that he is far more socially astute than his peers. No, in that he is as self absorbed as any other teenager.
To return to our drive, on the way home I did engage him once about the case of Kaney O'Neill. I briefly described the case and asked him what he thought. In his estimation O'Neill is in deep trouble if she cannot reach an agreement with the child's father. The courts, according to him, will not treat her fairly. There is no doubt in his mind that the "best interests of the child"
will be used against her. I asked him why he felt so strongly about this. In reply he said "Dad, every time you took me to the ER for stitches or an official place where no one knew you they looked at you as though you were incompetent or a Martian. Do you really think a judge is going to look past a wheelchair and see the person using it?" My son's statement is as sad as it is true. I just wish others saw it in the same way. For instance, in a recent story about O'Neill published by ABC News Arthur Caplan, a respected bioethicist at the University of Pennsylvania stated "From a bioethics point of view, this case is not particularly compelling. To me, it's a straightforward example of disability rights where the law is completely on the side of disabled persons". Caplan is correct, the law is on the side people with disabilities. But those laws are interpreted and ruled on by humans with little or no understanding of disability rights. Thus I share my son's deep pessimism that O'Neill will be perceived to be equal to the child's father simply because he will be walking into the court room.
From my great distance and with no direct knowledge of the situation I have no idea who should get custody of the O'Neill's child. What I do know is that the mother, father, and child will all lose if they step into a court of law. Having been through a divorce and separation that is the one lasting lesson I learned. I also know, as my son does, that the mother's disability is not relevant. But life is not fair nor are the courts when a case involves a person with a disability. If you question this conclusion just ask my son what he thinks.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Search This Blog
Wednesday, December 30, 2009
Legit Skiing and Parenting
Posted by william Peace at 6:46 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Subscribe to: Post Comments (Atom)
I posted an entry about the Kaney O'Neill case last week, and it's something I know my friend Kim has strong views on. Sadly, the debate got sidetracked by a completely irrelevant "your blog sucks" remark, and Kim said she couldn't comment on it because it made her too angry. She is looking to get married soon and wants to have kids, knows that she could look after them (as she's kept her various houses and flats clean, cooked for herself and maintained her guide/service dogs) and is worried about ending up in the same situation, not necessarily from a split relationship, but just from people thinking a blind, let alone also quadriplegic, woman couldn't look after a child.
Still, she has one thing on her side, namely that she has plenty of help and a stable family, and that if she hadn't dumped the boyfriend, the same people would have been looking after the baby most of the daytime anyway.
Did you hear about the suicide of Vic Chesnutt? (Had you even heard of him? A lot of people hadn't.) He was a folk/grunge singer-songwriter from Athens, GA, that I used to listen to in the mid-1990s and was a quad. He'd lived with the paralysis for 25 years or more, but struggled with depression which was made worse by huge debts caused by medical bills and lack of insurance. It's all the more shocking to a lot of people because it was thought that he'd gotten over his recurrent "flirtation" with suicide which pre-dated his paralysis.
My mother tried to hide and reject her disability. She was able to do this for awhile, but her condition suddenly worsened. She used a wheelchair when she went out for any distances. She hated it so much that I could never talk her into getting a good chair that fit her.
She was ashamed of her disability and I was not.
Stating the obvious. your attitude and actions have shown your son time after time that a disability is a part of life and not the end of it.
PS - I envy the skiing. I always wanted to try it but don't relish the idea of falling.
Matthew, I saw your post on O'Neill. It was a good one. Parents with a disability have very good reason to worry about custody of their children. When my son was little my ability to care for him was often questioned by strangers and a few so called professionals. In fact, I once took him to the ER for stitches and was asked if I had proof I was his biological father and legal guardian.
I have not heard of Vic Chestnut. But financial debt, disability and medical expenses all go hand in hand.
Becs, Part of skiing is falling. I am very good at falling. I have yet to get hurt though I am a bit sore after the weekend.
Your mother is like many that cannot cope with a disability. I have never understood this as I truly see adaptive equipment as exactly that--adaptive. Who cares how one gets around? Walking is great as is a wheelchair or a prosthetic device for an amputee. All have advantages and disadvantages.
I'm glad you had a great time skiing; I still want to try it when our economic situation is stable. I was glad to see your sons' thoughts--this makes me look forward to the teenage years. Like your son, my children have an extraordinary sense of empathy and insider understanding that will help them in any job that they do and will allow them to advocate for others--not just with disability, but in any situation where a nontraditional approach is needed. My daughter can eyeball a place and tell me if I can get in and exactly where I'll have difficulty--better than my husband can.
I hope Kaney keeps her child, that the courts are atypically friendly to her, that more judges and attorneys are raised by children of people with disabilities.
I have seen my own parenting questioned by my husband's family--the directly stated criticism that I'm "giving into it" (the arthritis/spondylitis)--ha! I'd rather be hiking mountains. That just stings--I'm someone who likes to get out and do more and that limitation has been horrible. And that statement followed by the "your children need you" blow. They have me--I'm here with them right now. I've heard someone else say that parenting is summed up by the physical tasks you do for your child; well, that misses a lot.
Most of it, actually. And I know a lot of people who do too much for their kids, so that their kids don't know how to handle things themselves as adults.
For me, using a scooter was difficult because of the increased comments about me giving into it--not just the arthritis, but the wheelchair use. While I see it as a positive thing to relieve pain and allow me more freedom, others don't and it's taken me a while to develop a thicker skin since I've always been sensitive to criticism. So to many people it's apparently okay to them if I am at home unable to ever attend the kids' activities (as happened) because that's better than "giving in" to wheelchair use.
I love Vermont. I attended a low-residency college there and always loved it, especially in the fall. Wouldn't mind living in a small Vermont village myself one day...
Frida, The hardest part of skiing for many is simply getting to the mountain. Adaptive programs do their best, charge on a sliding fee, often waive all costs but fail to appreciate the struggle many face just to get to the slopes. I hope you are able to ski some time.
Kids whose parents have a disability are an interesting group of people. Based on my experience, these kids are amazingly adaptable and can assess access in seconds. They are also adept at spotting creeps who are prone to say stupid, things. Gender and parenting play an important role too. Mothers are judged far more harshly than fathers. Women are expected, demanded, really to provide the primary physical and emotional support for their kids. When they do not do this they are judged harshly. So what O'Niell cannot do some physical chores. This should be the least of her worries. The case males me crazy and I wish her and all other parents with a disability well.
Stephanie, Vermont is a unique place. It is one of the few areas of the country I have a chance to actually fit in as a human being. The odds of me having a negative social encounter are significantly less. It is not a perfect place but it is a place I can see calling home. NY is certainly no that place for me.
Oh, this is very good to know about adaptive skiing! It's almost free to get to my sister's house near the mountains.
What I am learning recently is that by criticizing me people are also unintentionally sabotaging their relationship with my daughter and starting to with my son because they're not going to take someone else's side--and they do hear what other people say to me. Kids love their parents almost unconditionally.
If O'Neill *chose* not to do chores/physical tasks because of wealth (or even on her current income if she didn't have disability expenses) and hired an in-house nanny and maid and outsourced for laundry and cooking--as many families do--who would criticize her? Very few. It's all about her disability.
Post a Comment