Sunday, March 30, 2014

A Protest

Polish mothers of children with disabilities made national headlines in the last few weeks when they decided to stage a protest and rally at the Parliament building. Among the angry- at the very least a very prominent group of parents dealing with Cerebral Palsy. They want more financial support, more benefits and to have the stay at home mom practically recognized as a profession, deserving minimum wage. Mothers with children sitting in hallways versus unsympathetic politicians make for many a Kodak moment. They're determined. They're distraught. But to me at least the matter is not as black and white as media choose to portray it. To me it's one part of a broader discussion about disability and should be viewed in proper context. I don't think that creating a public spectacle with children in the middle helps the cause. I don't think reducing disability issues to monetary demands is the right way to go. And I for one detest framing my disability as something that people should pity,  a miserable existence  in need of compassion. I think protests like that are a bit shortsighted- I would think at one point these parents would like to get an education, a job, be treated equally, as productive members of the society. They will face a lot of prejudice, hurtful assumptions and unpredictable reactions and having engraved this image of just asking for money in the public's mind will surely not help. Yes, every little helps if only one of the parents is working. But to me it's a temporary fix. A stay at home mom should only stay at home for as long as she is needed there, to help the child transition into rehabilitation programs and regular schooling. Money helps for the time being but the stigma is forever.  And yes, not every child, not with every type and extent of disability can be independent. But I grew up with many special needs children around me never outgrowing the always present mother, confined within the four walls, relying on social services because they were never challenged and seen as people who could do more.  I once was like those CP children in the pictures and I must say I'm conflicted. Just like many of the angry mothers my mom stayed at home until I was 14. It was time for the both of us. I needed to be as regular a teenager I could possibly be  and she needed to find life and fulfillment outside of the house. I needed to stop being her "special cause" and she had to focus on things other than me. I on the other hand wanted to let go of all of the assumptions and lowered expectations and think of a future where I'm not cared for for the rest of my life. And this mission many years later led me to America. Poland that I left seems pretty much like the country I read about a decade later. Disability inclusion is still discussed in terms of financial payouts or employment training courses that will render the disabled useful. It's perceived as a social problem, a burden. Work places are offered tax incentives and benefits for taking upon themselves the brave enterprise of hiring a person with disability. Very little attention has always been given to creating an empowering, inclusive environment. An accessible world, where you can be as independent as possible. A time will come when a child wants more. Trust me, nothing is more frustrating that a feeling you get when when you want to set out to achieve your own goals, but the world around you is holding you back. You want more, but as at first you think it' s you, you soon realize that where you are simply wasn't created with people like you in mind. Money can buy you a lot of things. But it will not buy happiness or change  how you feel about yourself and your condition Human emotions only get more complicated as we grow older. That was how I felt ten years ago as I left my home, my family, my country. I could have stayed and tried to silence how year by year I grew more and more unhappy, frustrated and lost. I could have said, it's nothing- everybody feels this way and how dare I dream of a different life- I got it made.But it seemed like perhaps it wasn't too crazy to see yourself as "something more" while my country saw me as a problem.  It seems like not much has changed. To the mothers occupying the Parliament building I say good luck. I wish your cause was more about creating opportunities than money.But most of all I wish you ramps, accessible buses, elevators and sidewalks- your children will need them when they are no longer children. I wish on you- that universities and workplaces see their talents and true potential. That politicians that you ask for money today as well as strangers on the street no longer see them as charity causes and people with a hard life. A lifetime of respect is worth more than any spare change you get today. This may not be what you think about today, but give yourself five, ten, fifteen years and you will. Trust me, I know.


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