Before I knew about the field of organizational psychology I quit being an artist and started off to find a career I could feel good about making money at. On this search I got a job at a group home for juvenile delinquent boys ages 13-19 called Our House. It was an amazing place started by a former flower child and innovative peace loving thinker who devised a method of holding the boys accountable for their actions that did not involve any physical take downs or restraints. The doors were not even locked ever. It was a great experience. I started a GED program and taught art and Art and Math classes as well as set up a computer room for their use and to learn basic computer programs. They were usually with us for 4 –6 months and during that time you would see them get to become kids again.
The sad part was that they would be sent home to the same drug addicted parents or rough neighborhood and most of the time you would hear that they were back in lock up or worse. I realized it would burn me out to be working at this level for the long term and decided that I wanted to work with whole systems to change them for the better.
The focus on the big picture of our society’s mistreatment of the disabled seem to be missing from the conversation that starts with the question, “Should we resuscitate preemies and who should decide?” and travels through to asking, “What happened to them after age 2?” But is has not yet landed on my question which is,
“What if society actually supported and accepted its disabled as a valued and important part?”
This is a discussion of isms.
Disability is an ism. The fact is that society does not tolerate isms well, especially those in the minority. It balks at those that do not meet up to aesthetic standards of beauty and usefulness. Of course these aesthetics are shallow and ruled by ignorance and an assortment of negative drives. A critical cause behind outcomes like the case of Ashley Treatment occur because society is in general not supportive of people with disabilities in just the same way that corporate America is discriminatory against women and people of color. Now of course there are tons of people who are supportive of the disabled - but on the whole society is not. I know this because when people or organizations are really committed to something and supportive of it they act on it and put money into it. Like I said, many NICUs are the star earners/cash cows for hospitals so the bias is to keep em running and keep expanding our knowledge of neonatology – which is a great thing. But it could also explain whey there is so little hoopla and understanding of the outcomes of former preemies who are at home and needing support and not bringing in huge sums for healthcare providers for critical treatments. I have found that I have to fight insurance for the chronic conditions that Ellie has. Cerebral Palsy for instance is a chronic condition and requires lots of equipment, which I have to jump through a lot of hoops to get.
I have also found that funding for early intervention programs and care attendant hours for children with special needs whose parents are in great need of some help is very limited and getting ever more so as congress cuts back each year. Why is special education in mainstream public schools such a problem (for a great blog on this check out Charles Fox)? Most school districts don’t want to pay for special needs education and nickel and dime and under deliver the child and parents ad nauseam.
It seems that the amount of support diminishes as the disabled person ages. There also seems to be a hierarchy of special needs that get funded. Blindness gets the most money and then deafness. I think brain damage and cerebral palsy are at the bottom. So the more disabled you are the less help you will get over the course of your lifetime.
There needs to be discussion about changing the system that has a dropping continuum of support based on the assumption that people with cp can only be helped up until age 3 or 4 or in child hood. The assumption also holds that the disabled have nothing to contribute and that they are a drain on the system. God this bothers me and couldn’t be less true. I have read so many blogs by disabled people who are absolutely brilliant but can’t get a job to literally save their lives. It’s so ass backwards.
It is the ignorance and discrimination towards the disabled that sets the back drop for the discussion about preemies and their outcomes whether it’s acknowledged openly or not. I think it is why the preemie myths prevail because we don’t want to deal with our ignorance on the whole of disability. I read on one blog of a disabled person that disability was most simply a matter of equal access to all parts of society. If there were equal access there would not be disability or racism or chauvinism or any number of isms.
Also it is important to realize that people with disabilities have a lot to offer the world and are often not given the chance.
It’s the mindset that needs to change.
When you have a child who then turns out to be disabled, your mind set is forced to change. And of course you love them. So there you are, loving this person who is different from most of your friends kids. But you think they are great and they are and they teach you so much and you change at the deepest level. This is the context I am coming from when I discuss Ellie and how great my life is because of her. Because of her I have learned a new language and with it gained an entirely new perspective I could not have understood any other way. I am so much better even for the wear and tear.
The scary part is that the backdrop for Ellie’s life is a world where the disabled are discriminated against - a lot. And that is terrifying to me. I want people to read our blog and be able to understand that disability has many faces and many gifts. This is not trying to make lemonade out of lemons – it’s just the truth.