This dairy was inspired by a fellow Kossack who wanted to know where to begin and how to get involved with advocacy in the disabled community. The best way for me to tell the story of how I unknowingly because a warrior mom is to tell it in part from the beginning...That moment many of you know, that moment when you, your child, your spouse, parent, anyone you know and love has just had the world as it was known rocked to its core by one word: Disability. Aside from the obvious, caring for immediate health needs, pushing yourself out from the dark place and pulling your heart out of throat, what happens next? What do you DO next? This is the spot I was in nearly 23 years ago with my daughter. Shock over the diagnosis, shock over my world coming apart, and I was alone in a small town. Then I met my mentor and she helped me find other parents like me, she helped me find programs to help my child and then she tasked me with the biggest challenge: share the information, find others like you. And that’s how I began my life as an advocate for my child, and the disabled community.
KosAbility is a community diary series posted at 5 PM ET every Sunday 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.
This was long before the internet was the go to place for information, long before Google and Facebook. Long before I knew how to turn on a computer, let alone use one. Heck I thought I was all that and a bag of cookies because at the time I had a Brother typewriter with a built in word processor. Whoot!
Back then I had 800 numbers and lots of postage stamps. My mailbox was a very busy place. My phone was a busy place. If there was one truth I knew it was this: Information is power. It’s the old GI Joe mantra: “Knowing is half the battle”.
At the back of a book about caring for a child with cerebral palsy, just past the index was a list of phone numbers for the big foundations. ARC, United Cerebral Palsy, Easter Seals, ERIC, NHIS, The PATH Project...I called all of them and I got catalogs of information and more numbers. I called those numbers and got more information. I found programs and I found names and players. I read everything I could get my hands on relating to disability services and funding. I talked to people about various doctors and disability suppliers, I was determined to figure out how to handle the plot twist in my child's life and make sure she was going to be okay. I hunted daily, capturing any bit of data I thought would help me. I was going to a support group meeting in Fort Worth at the time, but still pretty much so on my own living way out in the country in a small county.
I was one heck of an information hoarder. I had files of info, I had a Rolodex of names that was close to endless. I had contacts, I made more contacts, I collected information and I felt empowered. I worked hard to educate myself about the challenges my child faced, about Special Education, about funding sources and programs to help people with disabilities. I found my voice, I knew my rights, my child's rights. And that’s when my mentor, dear Emma, said it was time to start a parent information exchange or as it came to be known PIE.
It all started with a simple ad in the paper and my phone number. I really didn’t expect to hear from anyone. But I did. At my daughter’s school, I mentioned the possibility of a little get together. I really didn’t expect anyone to be interested. But they were. By the time the meeting came around I faced an overflowing room of parents who had children with disabilities. And to think I had truly believed I was all alone in my rural area. Over the years that network grew into a number of support groups that are still functioning today. I don’t have as much direct contact with the groups now, but PIE lives on and parents are still helping each other.
This is not just about children. Adults can do the same thing. It’s all about finding people. Hit the internet, Google disability support groups in your area. Don’t want a support group, just info?--Hit Yahoo Groups, Facebook and a multitude of other special interest groups willing to help you find a starting point. In my town we have an ombudsman as the official face of disability issues for nursing homes, groups homes and home bound senior citizens. Find your officials, find your local advisory boards, talk to those people. Learn names, job descriptions, find out who is responsible for services you need, find out which issues are most likely to affect your life and your quality of life. Know where the discussion stands, know the players--Especially note congress members serving on committees dealing with or related to disability issues and make your concerns known. Gather your information and then reach out. I take a great deal of pride in following the example of a certain community worker…One who knows the answer to solving our issues is to reach out to each other, empower each other and work together toward solutions.
I am not a person who likes to engage in adverse or militant actions.That said-- I do believe in protest, the earliest advocates of the disability movement used peaceful protest all the time to bring attention their causes. I believe policy can be challenged and changed through many voices. Peaceful yes, but loud…very loud. Over the years I’ve become convinced a group or organization of people with disabilities or parents of children with disabilities is more likely to strike a chord with congressional critters than a lone voice. Use the media when you can--responsibly, of course, but make your concern and presence known.
The need to organize is growing. While Obamacare is the law of the land, disability advocates are anxious to see how Medicaid will be affected--The fear of block grant funding is less, but cuts to disability Medicaid is a real possibility.
The entire service delivery system needs to be coordinated more at the federal level and less at the state level. As it is, when a person moves from state to state, the money or services don't necessarily follow the person. The entire process of getting disability funding restarted begins almost from scratch. Some people lose the amount of funding they receive. More often than not, housing is not available or attendant help is on an as needed basis or worse a waiting list with ridiculous waiting times--sometimes many years.
Stay aware of the what's going on in the disability community. If you're on Facebook, like the page for Disability Scoop. Always great stories about the challenges and triumphs of people living with disabilities.
The bottom line--It’s all up to you. There is no right or wrong way to advocate. You can chose to tend to only your needs or you can reach into the community. Just bear one thing in mind, you don’t have to face the journey on your own unless you chose to do so. I remember the days when I felt alone and the words “cerebral palsy” were so big I was dwarfed by the size and implication of what they meant. I found strength and power in information and collaboration with others. I still do. You can too.
Nurse Kelley Sez: Here's a link to Chelsea's Magic Wheelchair, left over flower child's introduction to the soul of her activism.