Today I get the day off as we are having a guest post. Vita has begun a unique 'disability pride' programme within the organization. We have monthly activities for staff and members on disability identity and the value of difference. Domenic Pisante leads that project within the agency. Here he writes about how the discovery of voice and self worth changed the life of Hugh.
A Diagnois of Discrimination
By Domenic Pisante
Anyone dealing with any problem, however difficult, consuming or annoying it may be, can at the very least be assured that, usually, a solution exists. It might not be the easiest or pain-free solution, but there is often the possibility of something being done. You’re hungry? You can get something to eat. Your car gets smashed? You can go to the mechanic. You are sick? You can see a doctor. You get the picture. Something can be done. Unless you are a person with an intellectual disability. Then the story changes.
He wants to die.
Six years of suffering from chronic back pain, struggling to get out of bed, and terrified to move, surgery, so common to this kind of suffering was not be an option for him. Why? Because the person suffering “has an intellectual disability and the risk was higher” (this higher risk the doctors were so concerned about was a .5% increase). So, although the symptoms qualified for surgery, the person with the symptoms did not.
His pain was getting worse everyday. Emily, who has been working closely with Hugh for 3 years, was determined to make change happen. Because surgery was not given as an option for him, he came to see death as the only solution. He walked around asking to die. Something had to be done.
He wants to die.
Our phone calls were ignored and our letters unanswered. Hugh was in so much pain he could barely move. He told Emily and me that we were to do whatever was needed. We decided that we would go to the hospital and not leave until we got what we wanted: an answer for equality and against discrimination. We went to the hospital to speak with the head nurse who was conveniently busy all day long and couldn’t spare five minutes to see us. So we sat, with enough food and work to last us all day, if needed.
We did not see the nurse, but received a message. It was unacceptable for us to be there and we should have called to make an appointment. So we took out the appetizers…she was shocked that we would try such a thing. There was no response! We took out the main course…her face became flushed and it was clear she was annoyed with our presence. As we started on dessert, a second phone call would tell us we needed a letter stating that Vita would support him after surgery since he wasn’t a candidate for rehabilitation because…here’s a shocker… “he had an intellectual disability”.
After several days of annoying the hell out of them, we were able to meet with the surgeon. As the meeting date approached, Hugh asked to meet with Emily, Rochelle, and I. Together, we made the decision that we would do whatever it took to get the surgeon to understand that ‘all means all’ and he had an obligation to do what was right. The surgeon assumed it would be another day at the office, another rejection, another “I’m sorry, there is nothing I can do”. However, he was faced with three angry and determined people supporting someone who had found his voice. He knew we weren’t leaving without a surgery date. After the meeting, the surgeon left afraid to make another assumption about people with disabilities.
Hugh had a surgery date.
One month later, the surgery that was “too risky to attempt” was a success.
He loves living – pain free.
Although everyone is extremely happy that the surgery was successful, the process was unnecessary and absolutely absurd.
What Hugh went through was not based on a health issue but on fear of difference. Disability pride is about recognizing the worth in people with intellectual disabilities. This however does not just begin teaching self worth. We must also teach people that they will have to break down the barriers in society which seem to dictate and determine who is deemed worthy. There has always been fear and judgement that has stemmed from what people consider different-anything that does not come in a pretty package- something that is safe and easily recognizable.
Ignorance and fear are what lead to, immoral and violent action, or in Hugh’s case, inaction-which is just as bad, if not worse. Who has the right to decide who deserves help ? Who gets to decide right from wrong, worth from worthless? These are questions that have been asked since the beginning of time and will continue to be asked…and I myself do not know for sure. But what I do know is that no one has the right to be denied care and given the chance to live their life to their full potential because they are what someone else considers unworthy. Hugh discovered his life was worth fighting for. Doctors learned that Hugh and a voice worth listening to. There shouldn’t have needed to be a fight, but it was a fight that Hugh, and his newly found pride, was bound to win.
6 comments:
Wow, having a "sit in" and demanding action is exactly the kind of thing that we should all be doing in so many situations. I think it's great that these staff and Hugh took a 60's attitude to the problem. These days we are so likely to just say "oh well" and let prejudice go like there's nothing we can do about it. Good for you guys. "Peace Out"! I guess I'm showing my age here aren't I?
It's disgusting that they had to push so hard just to get his humanity and his right to basic medical care and his right to LIFE acknowledged. I'm glad people were there who could support him in his quest to be free of pain.
My 16 year old daughter's dentist refused to discuss braces for her because, in his words, "why does it matter that her teeth are crooked?"
My daughter has deafblindness, a feisty spirit and three brain tumors. She also has crooked teeth that she wants straightened.
Needless to say, we changed dentists.
I liked many things about this story, but one of the most important elements for me is that they advocated at his bidding and that at the crucial moment in meeting with the surgeon he was there advocating for himself. Too often we speak for and we speak without ... here people acted upon his instructions, carrying out his will and ultimately it was his voice that was heard. This to me is what we need to do, teach people to speak for themselves and to lead the 'advocacy team' if there is one. In this story I get the sense that Hugh was at the center of all activity - not peripheral to it as so often happens.
This is a great lesson in listening and forcing others to listen by not accepting the wrong answer. I agree with you, Dave, that the most important part was that Hugh was the driving force behind everyone's actions.
One of the limitations I was always told my son with Down syndrome would have is that he wouldn't be able to take something he learned in one situation and transfer it to another. That, of course, was another one of those myths.
But, this story made me wonder if the medical team learned this lesson well enough to be able to transfer their new knowledge that someone with an intellectual disability can recover from an operation successfully to the next person with an intellectual disability. Or will they, as so often is done, just see this as an anomaly and continue on with their discriminatory "policies"?
Let's hope that Hugh and his supporters truly changed some hearts and minds.
Dave
I, too, like that Hugh was part of his own self advocacy effort, with others acting as allies following his agenda and strategies rather than imposing their will on his own.
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