The following diary is a much redacted result of a series of email exchanges in May and June of this year between a recently disabled individual and a caregiver (and mother) of an individual disabled from birth. We both learned much about ourselves and the false notions we had of the world the other lives in.
It’s long. We think it’s important. You decide.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
From Ulookarmless May 4th
I have noticed that some people who are born "disabled" often don't seem to think so. That they simply accept their condition as not much more inconvenient than wearing glasses. Although the ramifications of this effect the people around them profoundly.
On the other hand, the changes in life style for a once able bodied person when faced with amputation, deafness, blindness, etc. can be readily documented.
From Left Over Flower Child May 5th
I have long noticed a sort of disconnect between those who are recently disabled and those who were born with a disability challenge.
I find most people who have been disabled since birth don't want to talk about it. I think it has more to do with not wanting to think about the differences a disability accentuates from the "normal" population. My own child has often expressed her frustration over working so hard to prove she can be like everyone else, she just goes about it a bit differently.
Over the years I've had the privilege of helping a number of young parents who recently had their world rent asunder when they were told they have a special needs child. It's a scary place, nothing fits the expectations. It's similar to going on a trip; you've read all the brochures, you've learned the necessary phrases to help you along, you're acquainted with the norms and local culture...You're set, ready, full of anticipation. But when you arrive at this new place, you realize you're in a different country.
Nothing you've learned will help you now.
After a while you find the new world isn't bad at all. It has its own rewards and you come to feel safe and competent.
As a parent, I've navigated special ed classes, medical needs, SSI etc. Now I have a grown daughter living in a supported group home with a very full life. I learned early on, no one will run a flag up a pole and tell you where to look for help. Many agencies are content to let you turn over stones until you find out how to access the system.
I may be wrong, but this is probably also true for someone recently disabled.
From Ulookarmless May 9th
You have changed my perspective completely. You have certainly made a connection for me!
As a recently disabled person, I seem to spend a good deal of my day, even after 6 years, thinking up ways to make my life easier. My bag of tricks grows every day.
Pain is a constant companion. Frustration is always just below the surface. In response, I have become a raconteur, a joke teller, a listener-to-other-people’s-woes. It helps.
The worst I have to deal with is the loneliness. Not "being alone", that’s fine. I understand that my kids and friends have jobs and stuff to do. But it’s hard to deal with those times when the pain kicks in and I know it will be several hours before all my meditation, yoga, visits from Dr. Vicodin tricks have any effect and I am alone with agonizing pain.
I often wonder how you must cope in your situation knowing how poorly I’ve behaved the few times I have needed full time help from others.
From Left Over Flower Child May 13th
I can't speak for anyone else, but I believe when a person with a disability or caregiver gets to the place of coping by adapting the environment, it's a huge turning point. Looking back now, I think the challenge of adapting our home for Chelsea's needs, kept me sane. When my daughter was younger I spent a great deal of time constructing various helping aides. When her seizures were swinging out of control I was terrified I wouldn't hear her if I dozed off, so we bought a baby monitor and put cow bells on the frame her bed and the monitor base next to the bed frame--If there was a seizure I heard it! Problem solved!
My coping skills and my daughter's are very different. She has a wicked sense of humor and very matter of fact way of dealing with "normies". This is her life, she doesn't know different. She's always been unable to walk, unable to speak, unable to live her life as her brothers do. She's very pragmatic and doesn't understand why anyone would feel sorry for her. She doesn't feel sorry for herself, it is what it is. People who exhibit any kind of pity for her usually get some sort of sarcastic response or a great deal of indifference from her.
I, on the other hand, don't think a person really ever stops grieving. I think over time, you just get more efficient at moving through it. Because we live in a rural area, my child was the only child with a profound disability and I was pretty much alone for a long time. I resented people telling me how brave I was, how strong I was--I didn't feel like I was either. The thing that upset me most was that I felt like I had to wear a mask, I had to be brave and upbeat for other people--my husband, my children, my siblings, my church family and friends. They couldn't cope with me crying or being upset. When I finally met another parent living in the same world as mine--I finally found some sort of peace. I needed someone to tell me it wasn't my fault, I wasn't being punished. I needed guidance and support and I needed to know I wasn't the first and I wasn't going to be last. Sure life was different, but at the same time life was good. That alone was a huge revelation. Life was (is!) good.
From Ulookarmless May 17th
I am familiar with misplaced pity. It has been a constant theme that runs through many interactions both with friends and strangers. The funny thing is, it’s often used as an excuse to "not invite"; "not ask to help"; even "not employ" on the grounds that I "won’t be able to... whatever"
You mention the "mask for others." How true! Life happens, you can’t change it, you can’t go backwards. I still get uncomfortable when others tell me how "brave" etc. I am. I’m just me. I’m just happy to be here. Disabilities are a pain in the butt, but they have to be dealt with.
The worst part is the effect on my social life. Imagine if you will, a man who spent 40 years of his life living in, or traveling to cities such as Sydney, Hong Kong, Singapore, London, New York, Manila, Rome, Los Angeles, Paris, Djakarta, San Francisco, Kuala Lumpur. Eating the best food. Staying in the best hotels. Suddenly restricted to a one bedroom apartment on the California Coast. Suddenly penniless as insurance was cancelled and medical bills took everything. Suddenly unable to drive, unable to stay awake much past 9pm.
For a while I was angry.
Then real life raised its ugly head and I realized that there were so many things I had always wanted to do. I write copiously (especially poetry), spend every weekend with my sons and daughter and spend most mornings arguing politics in the local coffee shop with the "usual suspects." I have come to terms with the notion that I’m no longer the "life of the party." I have trouble sitting through movies, plays or concerts. Can’t play sports, but I can ride a golf cart and give my sons tips when they play (I was a 2 handicapper).
My cyber-social life has become a virtual reality!
From Left Over Flower Child May 20th
I fully comprehend your anger and frustration. Refer to my diary KosAbility: Chelsea’s Magic Wheelchair for details of how my family’s world changed dramatically one day.
I hear you on the cyber relationship front. I often feel as though the majority of my closest relationships are online or in text form. I’m a diabetic with a lot of health issues because of diabetes, so I’m limited in how much I can do these days. I have two Yahoo groups devoted to crocheting and other crafts and the DKos community. While I do engage in some limited advocacy work these days, I’m a homebody and tend to stay on our little hobby farm, so I don’t really interact with other folks too much. My cyber community is a big part of my social life! lol...
From Ulookarmless May 24th
The story of Chelsea’s Wheelchair should be required reading for everyone who thinks they have been dealt a bad hand at the poker table of life. A more inspiring tale of spirit and courage is hard to find.
The story reminded me of those I call "The Do Good Community" we seem to be surrounded with all the time. Just this week, the House of Representatives wasted a bunch of time declaring one day every year "Disability Day", presumably to make themselves feel good. Another example of the "costs-me-nothing" charity prevalent in the sound-bite age.
I, for one, am sick and tired of millionaires asking the rest of us to give $10 for "the cause", of actors and musicians hijacking important subjects in order to step into the spotlight once again. (I am old enough to remember when a key part of the definition of Charity was the word "anonymous".) In the meantime, real charity is being performed by real people (like you) unknown and unheralded, often in dangerous places with little or no money, only to be ridiculed by troglodytes by Glen Beck and Sarah Palin. You may notice, this makes me mad!
From Left Over Flower Child May 27th
The Do-Gooders. I have to concur with your feelings toward the media blitz types. Philanthropy demanding immediate public feedback strikes me as being pretentious and belittling. Photo ops and shiny people touting all the good being done for those "less fortunate" makes me feel as though my daughter is nothing more than an item on a check off list or a prop to promote good will and pseudo sympathy. I’m especially offended by the Sarah Palins and the Glenn Becks who mock those trying to help and then use their own child’s disability as means to further their selfish agendas. My middle son sums this up best by asking if a lit candle still glows even if it’s covered. Is it truly essential for the light to shine upon acts of kindness or goodness? Not bad for a 21 year old.
I would like to say I have the good grace to allow them space to in which to be ignorant. But I don’t. So I won’t. I tend to think if a body has to tell me how grand great and wonderful they are, chances are really good they’re all hat and no horse.
Cynical? I’ve been around disability issues for a long time now as a parent, as an advocate and as a disability coordinator for Head Start. I’ve been though photo ops and newspaper write ups with mayors and city council members. But a strange thing happens after the election or the bond referendum--those folks are hard to contact..
Consider this for a moment: The disabled community makes up the biggest minority in the United States. Yes, the biggest minority. And in my opinion this community is the most under-represented community in America. It is the most diverse in race, age and socio-economic background. A community with its own social network, culture,iconic personalities, heroes, celebrities—even its own languages. (Aside from the obvious—sign language, communication boards and devices-- you don’t have to be around long before you realize we speak a sort of alphabet soup language—Acronyms for everything under sun!) And yet, the disabled community is so far under the radar of mainstream America, the issues of people with disabilities, caregivers and advocates barely make a blip on the screen. Activism in the form of leadership and strong, loud, consistent advocacy is the only answer.
I never planned on being an advocate. It just sort of happened. I was alone until I met Emma, and Emma didn’t live in my area. When Chelsea started school I found the other special needs parents. I wanted a network, I wanted to talk to others, I wanted us to pool resources and know what was available and the only way to do that was to start a support group.
I was shocked when I found out agency directors, school officials and various other professionals had referred clients to one another for years, but had never met! To me it was so simple—Meet and coordinate. And why it was never done before I don’t know, but here we are 18 years later and the network is still up and running, meeting every second Tuesday of the month. The support group has morphed into a three county wide group meeting every other month and does a lot of good work in helping parents with school related issues and agency contacts. The work, the support I offer is my way of paying back the love and acceptance I was given when my life took a big turn. Emma took care of me and gave me the skills and courage I needed to fight for my daughter, to help her carve out a real life, a genuine life. I feel a responsibility to enable others to do the same. Over time you learn how to work the system. And you learn to fight because nothing is gained easily.
Support is essential. You need someone to talk to, someone you can vent with, someone who is not going flip out if you’re not PC when you scream. You need someone who knows what it’s like to wear your skin. DKos has a many people who know that feeling well—They’re comfortable, nice to be near and just mold around your soul. Read the KosAbility diaries and you see community members in action, people reaching out to one another with support, advice and acceptance. That is true community service in my eyes, and service is love in work clothes. And that allows me to believe there truly is a place for everyone.
From Ulookarmless on June 3rd
Last week I learned that I now have a 3rd cancer, namely Chronic Leukemia. I appear to be a human Petri Dish in the Laboratory of Life! As usual the dKos community, through the wonderful hands of Sara R, came to my rescue with the miraculous gift of a comfort quilt with messages of love, hope and encouragement from you and many others sewn into it. I am humbled and eternally grateful.
Suzi, while I was hospitalized this past week I could sure have used your advocacy skills. The health care pros are wonderful, to a person they are dedicated and efficient, but why, oh why, are they surrounded by incompetent, officious, rules-driven, humorless bureaucrats from the lowliest office clerk to the highest paid administrator?
Nurses are forced to routinely ignore the rules to get supplies, food for patients, even to clip a patient’s nails. Doctors go through reams of "unnecessary" paperwork to request urgently needed tests. Drugs, on the other hand, flow freely from the dispensary as though the patient is no more than a lab rat in another experiment for big pharma to check out one more "discovery". In 5 days I was offered, and refused, 4 drugs for stomach pain, ulcers, sleep, headache, none of which were symptoms I complained about.
A Joint Statement on June 14th
To wrap this up, we came up with 5 wishes we both agree on:
- Treat the disabled like people. We are not on display. We are just like you, we have hopes and dreams same as every body else. That labels become a thing of the past is our fervent wish.
- Politicians and celebrities, would you please stop treating us as election and fund raising props. More action less talk.
- Obey the laws already on the books. Would that services were available in more towns and in more places.
- That all new parents of a disabled child have automatic access to their own "Emma".
- A national medical history registry must happen sooner rather than later. The funds are there, the savings are proven, only the dinosaurs in the Senate stand in the way. It’s the twenty-first century, we have the technology.
Do not mistake our acceptance of reality for complacence. Disability is not a condition we would choose for ourselves or our children. Nevertheless, as Chelsea says so eloquently "it is what it is."
Peace
Suzi and CJ