Who am I?
I am an American white woman, part-Mexican, Catholic, married, mother of two sons and a daughter, former physicist and present-day writer. I am a successful homeschooling mom, a singer, a blogger. Oh, and I also have CFS and significant back problems which limit my walking.
AnNa D took me to task – thank you, it made me think – when, in a comment on Dave Hingsburger’s wonderful blog, Rolling Around in my Head, I posted a comment when Dave mentioned a Times Square event featuring people with Down Syndrome in a hugely positive way on the giant screen. I wrote:
I am not ‘proud to be disabled’ – I did nothing to choose it and it’s not something I would choose for myself again
But I am proud of myself for managing to find meaning in the thing that randomly felled me, made me different.
Well, more different: I had my share all along in life of being different.
I write. That is mine. Sometimes I write about being disabled – sometimes I write about writing – sometimes I write about the many other things that interest me.
What I’m hearing is acceptance: the kids with Down Syndrome – and the adults with it, too, of course – and their families accept. Don’t try to change what can’t be changed – and find meaning in the rest of their life.
It’s the job of everyone who gets born.
AnNa D took me to task for saying this, this way. She said I am not allowing enough for other people whose experiences are different, and who are proud to be black. Or gay. And want to be part of ‘Disability Pride’ or ‘Black Pride’ or ‘Gay Pride.’
I am not arguing with other people’s experience of being disabled, but it got me to thinking about the question of identity, how and when it is formed, and what are its major components.
When is your identity formed?
Your first identity comes when you are an infant: if your parents wanted a boy, and you are a girl, it will alter your life, no matter how much you work on it later: ask any girl born into a family where there is a gender difference in expectations.
Here is the first place where ‘disability’ may come in: if dealing with Down Syndrome or other major genetic differences – in a ‘normal’ world – is part of your experience, it is there from the moment of conception. We all know these differences can get you aborted – and that horror is something that must separate you from other people the minute you realize it: you depended on surprise or willing parents just to be born. That kind of experience affects your identity from birth – and never stops: there are still people who will go up to a live American child and tell her she shouldn’t be.
But if you are ‘disabled’ from birth, you never have a part of your life where you are NOT ‘disabled’ – so it MUST form a big part of your identity. Either in embracing it or trying to distance yourself from it.
Depending on where you are born or where you live, the color of your skin and the economic status of the family (assuming you have one) you are born into force you to deal with a larger set of societal expectations: you form your identity in reaction to how you and your family are treated.
What are the major identity shifts due to schooling?
We all have our stories about school – how we were treated by our teachers and our ‘peers’ is a major part of our identity – and school both tries to enforce some kind of conformity and is hell for those who are the least bit different. A whole soup of alphabet bits comes into play: AS, ADHD, IQ, SAT, ODD, OCD… Identity bits – you bet.
Then add to birth gender, somewhere in there to make your schools days even worse, puberty and sexual identity and dealing with hormones. When a gay child realizes he or she is different in a whole new way, part of the identity again gets set – and the ‘straight’ kids make it worse by being deathly afraid they might be gay, too – and the whole thing makes finding friends and potential dating partners another complicated mess.
Disability is no respecter of age: things happen – accidents, illnesses. Some disabilities have an onset age. What happens, and when, during this storm of growing up, also affects how disabled people will consider themselves. Society adds others: ask the black youngster bused to an all-white school, or the child of Mexican migrant workers how their ‘social disability’ – for want of a better term – affects their ability to feel good about themselves.
When is your young adult identity solid?
Somewhere in their mid-twenties, most people are adult enough to know who they are as individuals. College – if available, beginning jobs (for those who haven’t already been in the workforce for years), student debt, living on your own, becoming a producing member of society. My kids are in this period right now, and it isn’t easy – joblessness affects how you feel about work – and the rest of your life. If you have a disability, the chances are low that it won’t affect your economic prospects in some significant way.
What happens when you marry, what when you become a parent?
Another shift in identity: you are now yoked to another person, or persons. All the ways this has an impact on identity go into overdrive. If you have or acquire a disability at this point, your coping skills are going to be shaken and tested, to say nothing of having to become an advocate for one of your own children, or your spouse, if disability comes from that quarter.
Timing affects identity, pride, and self-proclamation to the world.
I became disabled when I was 42, was working full time after acquiring a PhD, and had a husband and two small boys. We went ahead and had our daughter anyway – and my ability to care for her, and the family, was tested to the limit. I had to stop working – no brain to work with, no energy to get there and back safely.
Because CFS is an ‘invisible disability’ but even more significantly because of the severe loss of energy, my main coping strategy has been to stay home, expending what energy there was in dribs and drabs on only the most essential things – and that did NOT include any kind of advocacy,
So: who am I now?
All that said, I find my consciousness is still being lifted, my outlook is still changing – and my identity is a fluid thing. I am still not ‘proud to be disabled.’ It is more that disability has been a huge part of my life – along with being female, and all the other bits – and I would never pretend I am NOT disabled (though, like most people with invisible disabilities, sometimes it is just easier to ‘pass’ – and not have to explain everything to everyone all the time).
Just as with grief, where everyone’s experience is partly their own and partly what is forced on them, I don’t believe there is a right way and a wrong way to be disabled or to speak up for yourself as a disabled person (except for things like parents who try to have their gay children somehow changed, and people who think autism can be ‘cured’ – ie, things which refuse to accept reality, as far as we know it now).
There is plenty of room for and need for disabled people and their advocates to speak up. And for all of us to decide how much we can do.
For me, who I am permeates my writing – how could it not?
When I speak my experience, I don’t mean to denigrate anyone else’s.