Life A Few Years Later: 2nd Annual Blogging Against Disablism Day

Bad02
Disablism
is the British equivalent of the American term Ableism used to describe discrimination against people with disabilities. Ableism discriminates, devalues and denigrates in the same way racism and sexism do. Ableism treats those without disabilities as the standard of “normal’, against which everyone is measured.

With many thanks to Diary of a Goldfish for beginning this and coordinating it.

____________________________________________

Monday, March 19, 2001

To whom it may concern-

I am tired. I am tired of not being to clean my house. I am tired of not being able to wash a full load of dishes.I am tired of keeping a positive attitude. I am tired of trying not to be too much of a burden on my loved ones. I am tired of reminding myself there are others who have it much worse than me. I am tired of struggling to get out of bed in the morning. I am tired of having to use a motorized cart to do my grocery shopping. I am tired of pain. I am tired of having to sit down and rest every 10 minutes when we go to the mall. I am tired of being an albatross. I am tired of walking into a new store or restaurant and looking for the bathroom, "just in case". I am tired of being fat. I am tired of not being able to exercise enough to burn enough calories to not be fat anymore. I am tired of being awakened a half a dozen times at night because of leg and foot spasms, cramps, twitching and pain that WILL NOT GO AWAY.

I am tired of looking ahead. I am tired of needing to use a handicapped placard. I am tired of pretending not to notice people watching me to see if I really am disabled. I am tired of the looks in old friends’ eyes when they remember how I used to be and compare it to what they see before them now. I am tired of strangers asking me if I am really disabled. I am tired of fighting with an insurance company and with my attorney just get treatment I desperately need. I am tired of pain. I am tired of having to take medication.I am tired of losing my balance. I am tired of watching the weather channel to see what kind of pain the weather will bring each day. I am tired of "rating my pain".


I am tired of needles and doctors and tests and procedures and hospitals and physical therapy. I am tired of medical double talk. I am tired of feeling new pains. I am tired of numbness. I am tired of being tired. I am tired of asking for help. I am tired of beating myself up for not being the person I used to be. I am tired of having special needs. I am tired of not feeling whole. I am tired of not being "normal". I  am tired of not being able to…(fill in the blank).

I am really tired and I just want my life back.

______________________________________

I wrote this and included it in my first assemblage (below) about disabilities which was created in 2002, two years after my last spinal surgery. Since then I have learned I have something called and generally referred to as "accquired disabilities", meaning I wasn’t born fucked up. These disabilities are also referred to as largely "hidden and invisible", meaning that I have no discerning or visible evidence or deformity that would suggest that I am anything but "healthy and normal", albeit a bit fat. This is especially true if I am minus a cane or my motorized scooter until you see me get up and walk. Because of this, I have had to learn how to be disabled. My cane became "The Legitimizer". The scooter, the difference between enjoying days out instead of getting through them. Life changes.

I have learned that an incomplete spinal cord injury is not enough to make you disabled in the eyes of the Social Security Administration. However becoming chronically dysthymic (chronically depressed) and mildly agoraphobic because of the incomplete spinal cord injury does.
I have learned more about pain that I ever thought existed. I hate pain.  I always have. Before becoming disabled at 11 years sober,  I drank and used drugs for 10 years in attempts to eradicate the emotional pain of an unhappy and troubled childhood and physical pain was something you took a pill for and it went away.  Now, I know about chronic pain and nerve pain and that you can still feel pain in the numb places. I’ve learned pain also buzzes, vibrates, and burns. I know about pain that never goes away. Syndromes and terms for the complications of multiple spine surgeries have appeared and changed and remained the same for the last several years: Cauda Equine Syndrome; chronic pain and depression; suspected mild fibromyalgia,; blah, blah, blah…

I’ve learned some of your oldest friends completely disappear because they can’t cope with the "new you" and others find their way back to discover you aren’t the same you they once knew. Sometimes, you’re lucky and they take the time to get to know you again. Sometimes, you’re not.

I have learned that within the "disabled community" there is discrimination. For example, I have been told I am not really disabled because I am not in a wheelchair or  paralyzed in someway. I have been told that because I appear to function fairly well most of the time and work hard not to let my disabilities interfere with my life, I must not hurt as bad or be as disabled as I tell people. These things have been said to me by other people with and without disabilities.  It’s as though because I can walk, control my pain fairly well through drug therapy and sheer endurance, and manage to keep a smile on face and a sense of humor most of the time, I can’t be as disabled as I say.

I have also learned there are people who want to stay disabled not only in body but in mind. They remain stuck for the rest of their lives in chronic pain support groups and chasing the illusion of the magic pill that will make it so they can "live life again". I’ve relearned the vast difference in powerlessness and helplessness. If I had spent the last several years waiting around "to live again" instead of just living again regardless of circumstances or pride, I would still be waiting.

I’ve also learned I can’t abide the attitudes and excuses that exist for people with disabilities which prevent and in some cases enable them from having any expectations of what they can do or accomplish. Anyone who knows me, knows that I have a special place in my heart for people who live with cerebral palsy and autism. "Normal" people mistakenly think this is because I feel sorry or them or because I think their disabilities are "worse" than mine. I do not feel sorry for them nor do I believe they have it worse than me. I’ve learned the severity of a disability is largely relative to the person who is living with it. Plainly put, I am inspired by the sheer determination and hope of the people I know who live with these challenges and who do not allow other people’s lack of expectations limit what they expect of themselves.

I have learned that art and writing are my strongest, best and most effective in my arsenal of pain management. (The collage to your left for instance got me a new anti-dressant when I hauled it in to show it to my headshrinker..heh.) Often I can work on a collage or assemblage or essay for several hours before I realize it’s time for a pain pill or a rest. Art was and continues to be a huge part of my healing process. It helps me feel more centered and serene and continues to sustain me through challenges and changes. It has allowed me to take the small steps that were necessary for me to reconnect with the world after my injury. The more I create; I become more familiar with my art and the creative process. If I had not had my visual art to retreat to for solace and expression in the months when I was unable to sit and write, I can’t imagine I would have been able to make the strides in healing and confidence I now have in my work and in my new life.

I learned that love really does play an important part of healing well.  Without Manthing ‘s quiet, steady support, I doubt my recovery from the spine surgeries  would have gone well. It wasn’t easy but he stood beside me and supported me, often without my realizing it. Without his love and caring I doubt my recovery from the spine surgeries and all their complications, would have gone well as well as they did. It wasn’t easy but he stood beside me and supported me and loved me when I felt unlovable. And still does. Everyday.

Maybe I have come to understand I will never climb a pyramid in Egypt or visit Antarctica. I may never be the woman I once dreamed I would become or even the kind, bohemian grandmother who lives down the street doling out irreverant wisdom to inquiring minds. I may never write the best selling book that will help millions. I will never be a saint. But I will always be a good listener, a faithful friend, one who speaks straight and often true, one whose word can be trusted, one who loves wholly and one who never truly loses faith or abandons hope entirely. I will always stand for the weak, speak for those who have no voice, work to protect the innocent. And I will always be a person filled conflicting and sometimes contradictory characteristics, a person prone to deep solitudes, tinged with sadness, a person whose life is filled with moments of  gorgeous brilliance, happy accidents and moments of impenetrable, inconsolable darkness. I am  more than I ever hoped to be but less than I have dreamed.

And there’s a good chance none of it would have happened, none of it would have been realized,  if I hadn’t become disabled.

Advertisements

One thought on “Life A Few Years Later: 2nd Annual Blogging Against Disablism Day

Comments are closed.