Were you born disabled or become disabled?

- By Stephanie Hickey -

Where disability is concerned, I'll quote Lady Gaga and say, "I was born this way", though my condition didn't manifest itself until I was a toddler. From the age of two on, doctors and therapists were my constant companions. Operations were not scary undertakings but routine ventures and hours of therapy were, sometimes not always my favorite activities, but were as necessary and (honestly) boring as brushing my teeth. These things filled my world, as did my therapists and doctors who treated me simply as a little kid. That's what I was to them: a small child. I never had to see my disability as a difference, let alone as a negative.

But upon entering the outside world, I learned that I'd been kept in a bubble which quickly burst. Outside my family, doctors and therapists, I discovered people I didn't know existed: people who sometimes treat disability as something to patronize, fear and mock. I'd unpleasantly discovered that I was seen as "different" and that, in some individuals eyes', being different was equated with being "bad" in some way.

And upon meeting the real and sometimes nasty world, I was called ugly names, stared at as if I were a bizarre circus attraction from the 1930s, laughed at and taunted. All this disapproval and derision did not change the daily aspects of my being disabled. I still faced surgeries, doctors and hours of therapy with a casual attitude because every part of it was all still customary. Knowing others saw it as "different" couldn't change the fact that it was normal for me because, again I'll say, "I was born this way." The ridicule I endured, although infuriating at times, simply became another facet to being disabled and as routine and monotonous as the rest of it.

I suffered even in my bubble world, dealing with knowledgeable doctors and their pessimistic outlooks regarding the permanency of my status. This occasionally infected me with some hopelessness. They were doctors. Didn't they know best how far I could go, how much I could improve? But I decided to not always listen to their prognoses. So, a large part of why my condition bettered is because I didn't always follow doctors' orders and pushed myself. I grew to understand that they, for all their education and experience, weren't always right. Sometimes my intuition and faith in what I could make my own body do were what I should most trust.

Through trusting myself I reached a point where my disability isn't always noticed. After I've revealed its existence, curious people ask, "Were you born disabled or become disabled?"

Confronted with that blunt question I do wonder, "What's it like on the other side?" How would my life be different if I were still disabled--but not born so. I ask these questions of you now: were you born disabled or did you acquire your disability? Do you think that one scenario is better than the other? What is your opinion of this?

All Rights Reserved for "Born This Way" & Image, Lady Gaga

The Secret Disability

- By Stephanie Hickey -

"I would never have known if you hadn't told me." People tell me this often. They're referring to my being disabled. I've previously mentioned that I am not visibly disabled. I, in essence, "pass" as--for desperate want of a better word-- "normal". And individuals make this remark in a flattering tone, when it's the least complimentary thing one can say.

I have no wheelchair or leg braces. I can walk heel-toe, heel-toe (as opposed to awkwardly stumbling on my toes) beautifully, but the little things get me. Muscle spasms go unnoticed under dinner tables, cramps fill my wrists, and after tiring, I can no longer walk my good walk. Strolling down the street, I fall suddenly--apparently for no reason. My ankles have tightened up and given out on me. I have constant back pain I hide well. It's challenging for me to use (control them with precision) a computer mouse or a manual can opener and I want a man who will cut my steak. It's not romantic, but all these tasks are thorny propositions for me. But none of these situations are really obstacles to my daily life. They are simply irritations, minor nuisances.

Most irritating are people's attitudes that I encounter--their frustrations because I do find some tasks challenging and they see no obvious reason why I should. I don’t look like I deal with constant back pain, which medication only eases and gives me the capability to do things. This attitude doesn't bother me because I know those feeling that dissatisfaction don’t know my history. They don’t know my first sixteen years of life were filled with leg braces, wheelchairs, surgeries, therapy, therapy and still more therapy.

I suppose the most upsetting thing about “passing” is the internal struggle with which I deal. I don’t always disclose my disability, for fear of being judged as fishing for sympathy. I feel like I'm hiding my disability as something of which I am ashamed when nothing is further from the truth. But what is most painful is the inner conflict I feel when I am around the “visibly disabled”. I do not feel sorry for them. I know they don’t want or need my sympathy. But I experience terrible guilt. Those first sixteen years were packed with so many difficulties, challenges and so much hard work that I'm incredibly proud of myself, knowing how far I've come--that I've improved enough to "pass". I also realize how blessed I am that my condition could improve to this point, but it stings when I see someone whose condition I know can only improve so far, or perhaps not at all. Why should I be so blessed? Why can I not trade some of my progress so that other disabled individuals' conditions can advance? These thoughts always haunt me when I am with the visibly disabled and it pains me that some may think I don't understand their struggles because I "pass".

My parents say I shouldn't feel any guilt; I should thank God for my blessing and leave it at that. But I can't. For every blessing I count, I also wish I could share my blessings, my advances for every disabled person I know. As much as the difficulty of cutting my own steak or controlling a computer mouse is with me, so is the ever-present twinge of guilt I have for "passing". And I have to deal with it like I do everything else: realize it's a challenge but understand it's not impossible and move on.

Is your disability hidden? How do you feel about having a visible/invisible disability?

I Have a Disability and Deserve Your Respect

- By Keith Hosey -

“If you like me, you won’t discriminate against me.” – Cass Irvin

In case you missed it, March 2^nd was Spread The Word To End The Word day (the r-word, “retard”). So what’s the big deal? Sticks and stones may break my bones, but words will never hurt me, right?

Wrong. I used to use words without regard. I’d call things I didn’t like “gay” or “retarded.” Here was my reasoning: I didn’t mean anything by it. I was calling a thing ‘retarded,’ not a person. What was the problem?

Nobody’s perfect and I’ve certainly learned my lessons, I have since cut much of it out of my language (and continue to strive toward that goal). Now, in life, I correct people when they don’t use appropriate language. This applies to it all bigotry-charged words; racial, sexual orientation, disability related, etc. With disability related words, I am sometimes scoffed or mocked, it doesn’t really matter to some, it’s “too politically correct.”

When you use the r-word as a cut down, it hurts real people - people who might be you neighbors, friends or coworkers who have a relative with an intellectual disability. People you have never met standing behind you at the store or sitting next to you in a restaurant. Still think it’s a victimless crime?

Words are indicative of attitudes and world views. I grew up with a disability. Crippled, gimp, retard are all words that have been used at one time or another as weapons against me. Verbal weapons aimed to hurt and bully me. They pierced me to the core, sharply cut my heart, spirit, confidence, my world view of myself. I’ve seen this pain in other people, too. I’ve seen the hurt a word can do to individuals, family members, and friends.

When you talk about “cripples”, when you say that something is “retarded”, I remember every time those words were used as weapons against me. I remember the pain they caused before I was strong enough, proud enough in myself and my differences to not let it hurt. I know it hurts many others like me and, as strong as I am, it still stings a little. It stings because, if you use those words, you don't accept my peers with disabilities as equals. If you accept me as equal, if you consider yourself as not being bigoted, you cannot use these words. I will not accept it. It’s not “too much political correctness”, its respect… for me and others with disability as your equal.

I’ve written about the r-word and ableism before and so has my co-blogger, Stephanie Hickey. As Writer Jeff Goins said, “Do yourself and the world a favor and stop using the word “retard.” Period. No questions. No excuses. Just stop. Stop calling your friends “retards”… When you open your mouth and words like “retard” come out, well, it makes you look dumb. And a bigot. And kind of a jerk.”

Most people in “polite society” will hesitate to use the n-word, the three letter f-word for gay people. They are no different than my words. Some people think they are different because they don’t think it hurts anyone. Me, they hurt me. I have been called crippled, gimp, retard. I have a congenital disability and deserve your respect, so please don’t use those words that have made people with disabilities feel inferior for centuries. It’s time to change. In 2011, I’m making it personal.

Not convinced? Try these two stories. A Parent’s Story and The Retard in the Next Booth. Then make the pledge to stop using the R-word.

CAL Appreciates our Volunteers!

In honor of National Volunteer Week 2011 (April 10 - 16) we thought we'd highlight two of our volunteers. Like so many other non-profit agencies, we here at CAL would not be able to do our jobs effectively without great volunteers helping us every day.

Janie

Janie Eckstein has been involved with CAL for sixteen years. She has volunteered as our receptionist and has acted as our “Girl Friday” by helping with numerous projects including our peer groups! Currently, Janie is attending Murray State University. In her free time she loves to read, sew and spend time with her dog, Freedom. She has an interest in therapeutic touch and is working toward being a home owner. Her dedication to the independent living philosophy makes her a wonderful advocate! Always ready to lend a helping hand, she has given countless hours of her time to the Murray Center and for this, we will always be grateful!

- Jeanne Gallimore, Murray Branch Director

Jake

Jake Coates has been volunteering here at the Center in Louisville for close to a year now. Jake has helped with countless jobs around the office to help us. He started on the phones, and continues to help there, and has worked his way through filing, data entry, mailings, and keeping our brochures made and stocked for important outreach events. Jake is always eager to jump in and when he’s on a project, I feel like I can walk away and not worry because he’ll deliver. He said he really likes using the folding machine, and database work. In his free time Jake likes role playing video games, like Elder Scrolls, and writing fiction stories. Now Jake is ready to take his skills and abilities out into the workforce. While I’ll hate to see him leave us, I’ll love to see him succeed somewhere else.

- Keith Hosey, Associate Director

Thanks to ALL our volunteers for what you do!

A Busy April

- By Barbara Davis -

April is a busy month. There is April Fool’s Day (1st), tax time (15th), Easter (24th) and – in the Louisville area - Thunder over Louisville (April 16^th – visit http://thunderoverlouisville.org/ for accessibility information and www.ridetarc.org if you plan to TARC it to Thunder). See http://familycrafts.about.com/library/spdays/blaprdayslong.htm for a complete list of other April observances. I have included a few of them below:

· Autism Awareness Month: Autism can be overwhelming and confusing to those who have it, parent it, or provide healthcare, education and other services to those who have it. Local and national organizations keep us informed about all aspects of autism. To find these organizations type “autism information and support” in Google. You can add the name of your town to these words to find local service providers and support groups.

· Keep America Beautiful Month/Earth Day (April 22): A litter-strewn sidewalk can be inaccessible to wheelchair users. Pollution can trigger asthma and other health problems.

· National Child Abuse Prevention Month: Child abuse causes physical and mental disabilities, and even death. Children must be protected, not just in April but every day of the year. Additionally, every disabled parent knows the fear of having children removed from the home as a result of the parent’s disability. Disability advocates need to be vigilant in heightening awareness of parenting and disability issues.

· National Parkinson’s Awareness Month: With Parkinson’s my great-grandmother’s hands shook so badly she couldn’t feed herself with ease, and at the time (late 60’s) medications didn’t help much. Today medications and treatments do make a difference, and stem cell research offers hope for an eventual cure. Visit www.parkinson.org to learn more.

· Fair Housing Month: Speakers from CAL and other service providers will be at the Main branch of the Louisville Free Public Library on April 14 from 1-4 p.m. to celebrate Fair Housing Month.

· Stress Awareness Month/National Humor Month/World Health Day (April 7^th): Stress elevates blood pressure, causes strokes and heart attacks, increases pain, causes tension headaches and worsens a number of disabilities. Humor helps to manage stress. Googling “stress management” provides information on stress management techniques. World Health Day (http://www.who.int/world-health-day/en/) focuses on a variety of health issues in the US and around the world.

· No Housework Day (7^th): Do we really have to be told not to do housework?? Individuals with disabilities often struggle with housework. The internet is a wealth of information on cleaning shortcuts and adaptive tools for helping us manage our daily household chores. If you need housekeeping assistance and cannot afford to pay for it, call 211 for information on programs in your area that might help.

· Take Our Child to Work Day (28^th): An excellent opportunity to let our children see that disabilities do not have to keep us from working.

Photo Credit Flickr: http://www.flickr.com/photos/wxmom/5579291631/

Traveling with Disabilities: Trip to Canada

- By Pinalben "Pinky" Patel -

My journey to CN Tower in Toronto, Canada and Niagara Falls was fun. It was a long drive. It took us two days to get to Toronto with an overnight stop at a town in Ohio about eight hours from Paducah. Accessibility was not a really big problem on the road. When we needed a bath room break, we would stop at a live exit where there are many name brand places like McDonald's or Pilot travel stations that guarantee to have wheelchair accessible restrooms.

The next day we passed the USA and Canada border at Detroit. The bridge on the border was called Ambassador Bridge and we had to drive on it to get to Canada. It was beautiful. I wish we were able to get a picture of the moment, but my dad was driving, my mom is technologically illiterate and I can not hold the camera straight!

We went to Toronto first because we were not only going to see CN Tower there but we were visiting family also. On the way to Toronto from the Canadian border, we went to Kitchener, Ontario to see some relatives. In Kitchener, we also stopped at a Wendy's. I got some chicken nuggets and it was funny because I would get those same nuggets for a dollar here and there they were three dollars!

Most of our relatives in Toronto live in high-rise apartment buildings, which are not easily accessible. We figured private homes are not accessible so we took my wheeled potty chair but the bathroom doors in the apartments were extremely narrow. My dad had to take out a handle of the potty chair for it to fit through the doors. Painstakingly, we made it through four nights in Toronto.

All of the public places we went to in Toronto were accessible. The bathrooms were just like the ones in the USA: some places had accessible stalls and some had private rooms. Actually, I thought accessible stalls or bathrooms were a little bit roomier than the ones in the USA. But the weird thing about them was the grab bars were at a steep angle so basically if a person with a disability needed to hold on to the bar to sit on the commode, he or she would need long arms.

We decided to see Niagara Falls on the way back. Yes, seeing the Falls from the Canadian side was so much better than the American side. We saw the Canadian Falls during the day and spent a night at Buffalo, New York to see the American Falls at night. We saw many other places in Toronto, not only CN Tower. I just don't understand what is so great about Tim Horton coffeehouse, which is so famous in Canada according to one of my cousins. It was not Starbucks in my books!

However, a person who has been dealing with a disability most of her life and who likes to think of herself as a physical disabilities advocate, I notice places where wheelchair accessibility is needed. It just makes me angry when I see public places don't have accessibility even though it could be easily installed with little cost. If it were a poor country like India where people with disabilities are still called the insulting handicap word, I would not be so angered but this was an advanced country and some places did not have the required accessibility?

I found four places to be really annoying during my visit. One was a bus/boat ride in Toronto. I wish someone would have given me the name of that place. Then there was a store in one mall that was underground and there seem to be only stairs to go down to shop in it. The other was a boat at Niagara Falls that takes people right next to the fall and my cousins told me there wasn't accessibility on it.

The main annoyance was the building we stayed in. I understand that private apartments don't have to be accessible, but shouldn't getting into the building be accessible? Since the apartment building was high-rise, there were elevators but getting to the elevators was the annoyance. My cousin found a flat sheet of wood that we used as a portable ramp for my electric chair. Most of the time, we felt stuck in the building once we were in because it would be such a hassle to come out. I wish I met the owner of the building-- unfortunately I don't speak as well as I write to give him a piece of my mind! Yes, it would be so helpful if architects or contractors spent a day in a wheelchair before designing a building.

I had been told I am the only person in a wheelchair who thinks about accessibility and advocacy. Of course, that advice is wrong. People with disabilities don't usually and should not accept things the way they are especially if they are unfair. I just really wanted to give you a heads-up if you are ever in a situation like mine.

But in no way I am saying this trip was not worth it. It was a great trip! I am so grateful that I got to go to these places because I know that there are many people who don't get to see what I saw. We also attended a baby shower for my sister-in-law (in my Indian culture, a baby shower is not a small female-only party; it is a big ceremony!). The party was fabulous!

Photo courtesy of Flickr: http://www.flickr.com/photos/joie86/3731610979/

CAL Poetry Contest - Contestant #2

Vote Now "Like" your favorite poem on our Facebook page!

C.A.L. Center

The C.A.L. Center means to me,

That I can live on my own ; and feel so free.

Do the things I want to do;

Feel I'm the one who made it through.

With the staff close by,

To lend a helping hand;

And let me know ,they understand,

To help me do the things I plan.

By Howard Plank