Romance with a Disability

- By Stephanie Hickey -

I know that everyone asks themselves this question: "Will I ever find true love?" But this is a particularly tricky question if you are disabled. My insecurities aren't eased by tasteful remarks I read, such as one about Kevin McHale: Artie from Glee. To paraphrase, it went: "He's hot! I'd do him; too bad he's in a wheelchair." That wonderful comment hits the core fear disabled men and women have regarding love. Being disabled, can I really loved? Remarks like this also leave us with the attitude we are lucky to find someone, anyone to love us because we are disabled, as if it takes a very special kind of person to love someone with a disability. And kudos to them for doing so!

I used to feel that way--that being disabled I'd be lucky to find anyone to love me. I was I was always particularly self-conscience of my many operation scars. Will a man be repulsed by these? Would he find them strangely beautiful? Perhaps, what I hoped for most is that he wouldn't notice them at all; he wouldn't even care.

And then it happened. I actually met someone. He acknowledged my scars, but he didn't care about them. But still I worried whether or not I would be capable of meeting his physical needs in a girlfriend. What if he liked taking long walks, or worse, hikes in the mountains? Would he laugh at me if I fell? What if he didn't understand my days, the days my pain kept us from meeting? Like the scars, it didn‘t matter. And he never laughed at me. I was lucky. I found someone who understood the limitations my disability put on our relationship, never letting it affect how much he cared about me. And it did strain our relationship at times, even if he is very gallant and still insists it never interfered in any way. We eventually went our separate ways, not because of my disability, but because of the other factors that occur in relationships. He was not my true love--just my first love.

Now I’m on the search for true love again--and older--new insecurities plague me, particularly as a woman. I fear I may not be able to have children. What if I could have children? Could I be a physically adequate enough mother to provide the playfulness and exertion children need? How will that affect a relationship?

Although these worries nag at me, I realize they’re nothing more than the baggage I’ll carry into a relationship. What woman isn't insecure about her body? What man isn't insecure about his body? And what woman doesn't fear that she may not make the best mother her children need? We all come with insecurities and all relationships come with complications; disabilities may make things in a relationship more complicated, but that doesn‘t mean the obstacles are insurmountable or that they are even obstacles. Anyone who finds true love is blessed and if I stumble in my search for true love, it is not because I am disabled, but because I am human and we stumble in our search for love. Being disabled doesn't mean true love isn’t out there for you to find, even if it seems that way. It may just be harder to see it when it is in front of you.

Photo Credit Flickr

Why Don’t We Use ‘Disability’ and ‘Pride’ together more often?

- By Keith Hosey -

Why don’t we talk more about disability pride? I believe that disability is natural and that people with disabilities can do anything non-disabled people can do, we just do things a little differently sometimes. I understand that not everybody feels like I do about their own disability, but consider this: Eleanor Roosevelt once said “No one can make you feel inferior without your consent.” If we can’t be proud of who we are, how can we ever expect society to treat us as equal?

We need more pride in the disability community. We need to celebrate our heritage and our abilities. Other minority groups celebrate their proud heritage, so why not us too? This community has athletes, comedians, professionals, actors, CEOs, etc. People with disabilities have climbed Mt. Everest won Ms. America and even became President. We have quad rugby, paralympians and the third most used language in America (ASL). We are the largest political minority and, as consumers, we have huge spending power.

Even though Club Foot is one of the most common congenital disabilities in the world, I only knew of one person who was like me when I was growing up, a female figure skater. I could identify with her because we shared the condition of club feet. Only one person who I could say, “hey, she’s like me, I can be successful too.”

We need to recognize and celebrate those people who are role models with a disability. We have Marlee Matlin, Ray Charles, Penelope Trunk, Muhammed Ali, James Durbin and Mark Zupan. We have Leroy Colombo, a Deaf man known as the “world’s greatest lifeguard,” who saved more than 900 lives. We need more role models – and not just the famous ones, but neighbors and friends - to be proud of their abilities and of this community so that kids can say, “hey, he/she’s like me, I can be successful too.”

Are you a person with a disability? We need YOU. Celebrate your disability pride.

Letter to the Editor

Dear Editor:

People with disabilities have the right, like other registered voters, to cast their ballots at polling places that are accessible to them. This includes, but is not limited to, people physically accessing their polling places in order to vote independently and privately.

You may have been notified that your polling place has been moved or noticed some changes when you voted in the May Primary. These changes have happened for Kentucky to be in compliance with federal laws regarding voter access. The Commonwealth, like all other states, is required by several federal laws, including the Americans with Disabilities Act and the Help America Vote Act, to make voting fully accessible to all voters, regardless of disability.

We, as advocates, have heard from people with disabilities over the years who have used absentee ballots to vote because they were unable to enter their polling places due to physical barriers. Use of absentee ballots should no longer be a necessity.

The Secretary of State, the State Board of Elections, County Clerks, the Kentucky Disabilities Coalition, and other disability rights advocates have been working hard to ensure that polling places are physically accessible and have at least one accessible voting machine. Kentuckians with disabilities can vote independently and privately. No longer are individuals with disabilities prevented from casting their votes in voting booths like other registered voters.

If you are an individual with a disability who experiences problems with accessibility on Election Day, call your county clerk for help. You may also contact the State Board of Elections (1-800-246-1399), Protection and Advocacy (1-800-372-2988), or the KY Office of the Americans with Disabilities Act (1-877-423-2933).

Sincerely,

Marsha Hockensmith

Executive Director

Protection & Advocacy

100 Fair Oaks Ln, 3rd Floor

Frankfort, KY 40601

Norb Ryan

Kentucky ADA Coordinator

KY Office of the Americans with Disabilities Act

500 Mero Street, 2nd Floor

Frankfort, KY 40601

Mentoring Day is all about “You Can”

By Keith Hosey

We just finished up another Disability Mentoring Day (DMD) here in Louisville, an event that is nationally coordinated by the American Association of People with Disabilities. This was the seventh year the Center has been the city-wide coordinator. I’m happy to say I view it as a wonderful success. Yes, we had transportation issues and logistical issues and a couple people are going to shadow at a later date because we couldn’t secure a location in time, but over 60 individuals with disabilities and their mentors got to experience something extraordinary. Every year, I hear so many wonderful things from both mentors and mentees.

At the heart of DMD is the message, “You Can” and that may be why I love the event so much. Our one-on-one mentees get positive, real life work experiences, some with professionals who have disabilities themselves. Our group event with Jefferson County Public Schools shows students with disabilities career opportunities and identifies the skills and education that are necessary to achieve those goals. They hear from several working professionals with disabilities about their experiences and what it took for them to be successful. Our host companies and employers who host mentees have a great experience and often want to host the next year.

I wanted to share my favorite DMD story, which embodies the “You Can” attitude. I’d like to tell you about Annie and her success. Annie uses a wheelchair. She graduated college and began working with the Center for Accessible Living and Vocational Rehabilitation to find a job. She applied for jobs; she shadowed a mentor one year for Disability Mentoring Day and has since told me that the half-day experience gave her the confidence to secure her next job (at a fortune 500 company). Unfortunately that job didn’t work out.

She lost the job, but didn’t let the setback get her down. She looked for another job and didn’t find one right away. She dug in, she didn’t give up. She eventually saw a job open at the very place she shadowed at several years prior. She was remembered, she was hired and she still works there.

Now she pays it forward as a mentor and motivator. Every Disability Mentoring Day she mentors other people. The last two years, she has also spoken to high school students with disabilities on Mentoring Day about working. Annie often thanks the Center for Accessible Living and me for helping her along the way, but really, I have to thank her for having the motivation that we should all have, regardless of ability. While Annie is often my example of what DMD can help someone achieve, she is by far not the only story. Here’s to next year being even better.

Photo Credit Keith Hosey

Do you have dreams? Pursue your dreams.

- By Keith Hosey -

I’d like to talk about so-called professionals, self-determination, the “Lizard Brain”, and how they matter to me and you. I recently read the book Linchpin by Seth Godin. It’s a great book – it will inspire you. Linchpin talks about the “Lizard Brain,” that voice inside all of us that tells us we’re not good enough... we won’t succeed. It likes comfort, safety and routine; it fears change and the chance of success. It fears these because it fears the unknown.

A very good friend of mine last year told his personal story to a group of high school students for Disability Mentoring Day. I have heard the story before; it’s great, it’s inspiring and I enjoyed him telling it with such passion to these students. You see, he had a brain aneurism in the womb that has caused some learning differences. He was told by his high school guidance counselor that college was a waste of time for him. He was better off just talking some job out of high school and settling for what he could find, according to the counselor. He was told “No”, “you can’t” and “you’ll never be good enough,” by a so-called professional who should inspire the students they work with, not discourage them.

There are so many wonderful individuals in the education industry (and I am lucky to know some) who are doing great, inspiring things for students and especially students with disabilities. I hate that people like this guidance counselor had to sully their profession. This really goes across the spectrum of those I like to call “so-called professionals” who are in a position to do so much to inspire people to achieve, but for whatever reason, they think everyone needs their prescribed “dose of reality”. This includes teachers, guidance counselors, coaches, mentors, case workers, therapists, etc.

What if that counselor had said, “Hey, I know you want to do this and I think you should try it. I’m going to be honest with you, it won’t be easy and there’s a chance you may fail, stumble, or give up. If this is what you want, then reach for it and I’m here to support you.” What a difference! Luckily, my friend is a stubborn and hard headed guy. “No you can’t” fueled him for the nineteen years it took to get his degree. He now has his bachelors and is in a Masters’ program to be a teacher in special education.

The Lizard Brain tells him to stop, to quit. It says “That counselor was right; he’s a ‘so-called professional’ after all.” Peter is the Lizard Brain’s worst enemy. Not only does he know how to silence the voice, he works hard to silence it in other people too. He failed Algebra six times in college and I’m sure there were times when he wanted to give up, but he has good friends and family who cheered him on. Now I know that he will pay it forward as a teacher, because I know that his passion is teaching and coaching individuals to success. He said it best at Disability Mentoring Day 2010, “You have dreams? Pursue your dreams. People tell me I can't because of my disability… I'm in the business of proving them wrong.”

DISABILITY MENTORING DAY (DMD) 2011 - October 19

- By Barbara Davis -

DMD is a wonderful experience, both for those who have never worked, and for those who have worked but are facing a career change due to disability. The two hour mentoring event allows the opportunity to learn about a job, to develop self-esteem, learn new skills and to discover something new about oneself. It is also an opportunity to develop contacts and references in the business world. Some individuals who have participated in DMD have found jobs, either directly or indirectly, as a result of participation in DMD.

On top of all that, it is just plain fun.

Students with disabilities who shadow mentors in a group setting seem to enjoy interacting with the other students. They have a chance to make friends with someone who is interested in the same career and form a bond with someone who isn’t going to say, “You can’t do that,” to them. During the lunch portion they share stories and perspectives, and sometimes phone numbers. They share jokes. Everyone that I have spoken with over the years has had glowing reports of their experiences with DMD. Some have gone on to shadow a mentor a second time, in a different field. This has enabled them to compare two careers that might be of interest in order to determine which career suits best.

Some students may shadow a mentor alone and then compare their experience with others who have also shadowed alone. Either way, the friendships, business contacts and new skills have made for a positive and rewarding experience.

If you would like to know the fun of participating in DMD, call Larry Hosey at 502-589-6620. You can also visit www.calky.org to learn more about DMD.

A Thank You from a Consumer

Dedicated Susan & The entire CFAL Staff...

Heaven must be missing some Angels...
To me that is obviously true...
Each and everyone of you give and re give until the day is through...
Then when the dawn returns again with a need confronting you...
We are greeted with a heart felt voice...
One with reassurance, truth and choice...
Who marches on and takes a stand...
For all who needs a helping hand...
So believe me now my dearest friends as I speak of true...
Heaven must be missing some angels each and everyone of you!!

With all my heart..Sandra L. Monroe

A TEACHER’S WORDS HAVE POWER

- By Barbara Davis -

As students are getting ready to head back to school, I am reminded of a quote I recently read from musician James Durbin. He said, “A teacher once told me I’d never amount to anything.” As a person with multiple disabilities and the mother of two sons with autism, reading that quote made me sad because it brought back a lot of memories of similar teachers for both my sons and me. Fortunately for all of us, we also had some pretty amazing teachers who made a real difference in our lives.

James has Asperger’s Syndrome – a high functioning form of autism – and Tourette’s, which causes facial twitching and other symptoms. Despite this teacher’s remark, he went on to perform in a local theater group, in local rock bands, and ultimately, to audition for American Idol and make it all the way to the top four. He also has a fiancée and a two-year-old son. I’d say he definitely amounted to something.

A teacher’s job is not only to educate, but to guide, mentor, inform and encourage. A good teacher strives to equip a student with the means to reach his or her fullest potential; she (or he) does not tear a student down and put up barriers to success. Thankfully, many students like James go on to use these hurtful words as a challenge, and they are able to accomplish wonderful things in their lives.

Other students, unfortunately, may automatically internalize those hurtful words, especially if heard from more than one teacher. Students with disabilities and other “differences” are vulnerable to being bullied from their peers. This is outrageous enough, but they certainly shouldn’t be bullied by the teachers who are supposed to be guiding and encouraging them.

A teacher often has a lasting impact – positive or negative - on his/her students. Fortunately, good ones outnumber the bad in my experience. If you are a teacher, or are aspiring to be one, I hope you will do whatever you reasonably can to enable your students to reach their fullest potential. If you are a student who has a teacher who belittles and discourages you, I hope you will not let your teacher’s hurtful words keep you from reaching your fullest potential. When you refuse to allow others to discourage you, you become the best person you are capable of being. You also show the teacher and the rest of the world that disabled doesn’t mean unable.

Photo Courtesy of Keith Hosey. All rights reserved.

Why I Care about New York’s Marriage Equality Act (And So Should You)

- By Keith Hosey -

On Sunday July 24th New York joined the elite few states that recognize GLBT people as human beings and full citizens by legalizing and legitimizing same-sex marriage (while my state went as far as passing a law banning same-sex marriage a couple years ago). Congratulations to the GLBT community for this win, it’s fantastic and I’m happy for all the couples that have gotten married so far.

But I’m straight and a disability rights activist, why should I care about GLBT rights (other than the fact that I have numerous friends who happen to be gay)? Maybe it’s because of the way I was raised, to value people as people. I carry a picture of Dr. Martin Luther King, Jr. in my wallet with the quote “Injustice anywhere is a threat to justice everywhere”. I believe in civil rights and equality for all people. I can’t talk about disability rights without acknowledging the rights of everyone.

Someone once told me that I only care about disability rights because I work for the Center. That makes me smile and laugh. Sometimes I wish it was a nine-to-five belief. I believe that every person, no matter their background, genetic markers, birthrights, origins, etc. deserves to have the respect of being treated as a human being. I don’t understand discrimination, possibly because I’ve personally experienced it. I don’t think that anyone should have to endure discrimination in a free society, that we should all be afforded due respect as people.

I don’t understand people who can fight so fervently for their personal social justice cause and not care about the other groups. I’ve known people who steam at the use of the word “fag” then ask me why it matters if they use “retard”... It’s just a word after all, they say. I believe that we’re all tied together in this fight for equality. How an African-American is treated in a business has an effect on the disability or GLBT community -- and vice versa. The “glass ceiling” in women’s pay equality is as frustrating to me as an inaccessible business. Are my civil rights any less important than yours? Are yours less than mine? I personally don’t think anyone else’s value is less important than mine. Because we’re all only people after all… and isn’t that what civil rights are all about?

A Suggestion

- By Pinalben “Pinky” Patel -

I have been a vocational rehabilitation client since 2003. I am grateful for VR’s help in getting me two laptops, Dragon NaturallySpeaking, a lift for the family van, course books, and other software throughout the four years of my college education. My disability, Fredreich's ataxia, is a progressive disease so there is no telling what type of assistive technologies I would require as time goes on, and VR helped me get a ceiling lift, a Dragon NaturallySpeaking update for my new laptop I just bought, and a wheel chair accessible van even after college.

Without their financial support, I might have never completed my degree in Print Communications from Murray State University or be a published freelance writer. However, I do have a suggestion, which could improve VR’s services for people in a situation such as mine.

When I needed an aide for the school day, VR provided funding but never helped in finding one. It was very difficult to find reliable attendants on my own.

I had people who called and set up an interview, but they did not show up when time of the interview came. Some aides I hired just did not show up when it was time for them to come. They just have a smiling, gracious face until they just don't come. And finding a substitute when the aides did not show up or wanted a vacation was a nightmare too.

I think an organization would have better luck in finding reliable people to work. Therefore, instead of funding the person who has to hire aides, VR should give money for the aides directly to the college he or she is attending to hire attendants. It would be so nice to know when you get off the transportation you are using, that someone will be there for you. That was the feeling I had in high school, but I did not realize it until I started college.

I'm not really That Different from Everyone Else, Am I?

- By Robin Ungar –

I was born with Strabismus (both eyes crossed). From infancy through my early teens, I had to have surgery seven times to correct the Strabismus, and then to reconstruct the front left side of my head with plastic surgery. I started wearing glasses with an eye patch on the left eye at three and a half years old.

Although I do not remember the surgeries, I do remember some of the teasing I got because of my appearance. I am the youngest of three children and my condition and surgeries only served to reinforce my siblings' tendency to be protective of me when others teased me about my appearance. In fact, my appearance was so different from everyone else's that I did not have a baby picture to put in the year book my senior year of high school because all of the pictures that we did have were of my head being buzzed, which I hated, but my sister loved.

During my school career, I learned slower than other children and received individual attention through the IEP program. In high school, my parents were told by my high school counselor that I would not graduate from college. Well with my determination and persistence, I finally graduated from U of L with a BA in Psychology in May 2010. No one tells me that I can't do something and the word can't is no longer in my vocabulary. However, I do admit that I never thought I would graduate from college either, but with the love and support that I got from my family and friends, not to mention my proofreader, I finally did it!

I started at Murray State University in the fall of 1992. I chose Murray State University because of the great program they have with helping individuals with learning disabilities. So what was the problem that I ended up at U of L instead? Being that I lived on campus, I had to take more then one class at a time and that affected my grades too badly and after being put on academic probation and suspension too much, I dropped out of college in 1995, but only temporarily. As a promise to my mom on her death bed and to prove, not only to myself, but to my high school counselor as well, I started at U of L in the spring of 2003, the semester after my mom passed away. To assure my success, I took just one class a semester.

Not only did the surgeries affect my appearance as a child, but I personally believe and think that it has affected my facial expression even as an adult because I do not smile. I was actually told by my eye doctor that it has nothing to do with the surgeries I had. Due to my lack of smiling, I am looked upon as being angry, when, in fact, I am not. I am on medication for anger/depression. I sometimes wonder if my anger/depression issues stems from when I was being teased all of the time due to my surgeries and has just gotten worse because of my mom passing away.

My next big goal in life is to find my dream job working with individuals who have special needs (i.e. intellectual and mental disorders). I want to help people like I have been helped all of my life. I also want to let special needs individuals know that they are not stupid (they are actually very smart), that it is okay to be a slow learner, and to not let someone tell them that they can't do something.

I want to mention the song "Don't Laugh At Me" by Peter, Paul, & Mary. It is a great song and one of my favorites. It has to do with people that are different. I hope you all have a chance to listen to it at some point in your life.

People can be really cruel. Please do not be that person.

NCIL 2011

- By Keith Hosey –

Washington DC: National Council on Independent Living (NCIL) 2011 Conference.

This is my second year in a row at the NCIL conference. It’s invigorating and energizing to be around so many advocates who have literally changed the course of civil rights and inclusion for people with disabilities in America. It’s empowering to see so many people with disabilities gather and organize to advocate in our Nation’s Capital. Revolutionaries, radicals & general rabble rousers from all over the country who are fighting for the same thing that we are in Kentucky: independence, choice, equality, our fair share of the American dream.

It’s a reminder for me. It’s a reminder that we are in a fight, a fight against ignorance, intolerance and indifference towards people with disabilities. It’s also a wonderful reminder of what we’re fighting for, of what’s at stake, of what’s possible. Throughout the year, we in the movement – I – sometimes forget what it’s all about. I forget the big picture: there’s a nationwide independent living movement out there, a civil rights movement for people with disabilities, “nothing about us without us”, “free our people”, “our home our choice”.

Then I get here. The energy is palpable and everyone feeds off of each other’s excitement. We take over a hotel, a multi-block radius, with wheelchairs, scooters, walkers, crutches, white canes, service animals. There are little people, amputees, people who limp, stutter, stagger, swagger, and move in mannerisms that are different, people who talk with their hands and fingers. I often wonder what other guests and people on the streets think about us. But by the 2^nd day, we’re part of the natural mosaic, people don’t give second looks, they don’t stare, they don’t bat an eye. The other guests stand in the lobby with us like it’s any other Thursday. To me, that’s what we’re fighting for, what’s at stake, what’s possible. It’s an amazing conference and I wish everyone with a disability could experience it once to experience the energy.

Image Property of Independence First of Milwaukee, WI.

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

CAL Poetry Contest - Contestant #1

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

"CAL what you mean to me, without your information and helpful resources there is no telling how my standing would be.

Like time, money, and home management this is just to name a few, there is even more things that this Center for Accessible Living can to do.

Wow! What a difference CAL has made with great knowledge and great experience up to this date.

All of the services they have for those that are disabling from state to state;

This is a place to get a fresh start, when it comes to the pride in the workers they do they take it to heart.

CAL that has a passion for healing; and a change for someone with a disability having not known what to do when it comes to independent living.

Cal makes it easier for us to deal with opportunity and responsibility to exercise their rights.

Independent living is what we do to help them make their own decisions day –to- day life."

- By Stacee Spurling

Thank You Note - We're Happy We Could Help

March 3, 2011

Mr. John Leonard
Center For Accessible Living
305 W. Broadway Suite 200
Louisville, KY 40202

Dear Mr. Leonard:

This is a letter of thanks to all those involved in building the ramp for my mother, Frances -- a thank you from the bottom of my heart! It has not only made the situation easier for me and her, but it will improve her quality of life, because I was having to leave her at home because I could no longer negotiate the steps, having to carry her heavyweight walker down the steps and then go back to get her and help her down the steps. I am no “spring chicken” myself. Sometimes, depending on the situation, we have to use a wheelchair for her. Now she will be able to accompany us more often.

The builders did a wonderful, professional job building the ramp. Everyone who has seen it has commented on it positively. There have been no negative comments. Some of the comments have been:
“They really did a good job.”
“That will last a long time.”
“Everything fits together perfectly.”
“They must have used a nail gun to drive the nails”, because he didn’t notice hammer marks. (He also commented that he notices details.)

These are only a few that come to mind. Our comment is that “it exceeds expectations”.
I think this is a wonderful program because it addresses the handicap without regard to a financial need. My mother lives with us because she cannot live alone physically or financially. We could not have afforded to build it for her but the fact that we are responsible for her may have caused problems with financial qualification. I hope this program can help others as much as it has helped us.

Thanks again for all you have done to the program coordinators, builders, program funders, and anyone else responsible for the program that I have not mentioned.

Yours truly,　
Beverly Trail

Reflections On The Long Road We Have Come

- By Barbara Davis -

In the 26 years that I have been working for CAL in some capacity or other, I have seen a lot of positive changes take place for individuals with disabilities. I am proud to say that in various ways, I have had some small part in some of these changes, particularly in the area of awareness.

Recent changes in my disabilities have caused me to pause and reflect back on the long road we have come. This reflection has also made me aware of how far we still have to go.

As a teenager in the late 60s and early 70s, I used a wheelchair until surgeries and other treatments enabled me to walk with a walker, then a cane, and then “corrective” shoes. I lived in Florida then, which means that every time visiting relatives came to our town, my family took them to the various tourist attractions in that fair state. Unfortunately, I wasn’t able to go to many of them because the attractions were not accessible. I stayed home and waited for them to bring me souvenirs from wherever they went. These days whenever I go home I can go to any tourist attraction I want to, whether I am using my chair or not. I can also fly home with my much greater ease than I could when I first moved to Louisville. Having said that, trying to board a plane with multiple disabilities today is still not a picnic.

I am thankful that I don’t have to walk up to total strangers in the mall or elsewhere and ask them to make a phone call for me. Before cell phones became widely used, phone booths had finally become equipped with amplifiers so that I could make phone calls myself. Currently, I have a cell phone that is hearing-aid compatible. The volume could stand improvement, but most of the time I can hear on it decently enough if I really concentrate.

Thanks to improvements in transportation and other services, I can a ride a bus to almost anywhere I want to go, and I can call 211 to find out how to get on a 10-year waiting list for attendant care, a ramp, housekeeping assistance, or some other service. I can remember a time when buses weren’t accessible, and none of those services were offered at all, let alone complete with a waiting list.

The heat this past summer has caused my MS and other disabilities to worsen. I am once again using a wheelchair. I am not sure yet if this will be permanent, as without health insurance I cannot get the needed diagnostic care and treatment. Without medical documentation, I can’t get the services I need, so I feel like I am almost back to the point I was when I was a teenager, only this time I don’t have parents to help me out the way I did then.

What I have discovered during this second time around in a wheelchair is that while there are more accessible buildings than there used to be, there are still a lot of buildings that are not accessible. There are a lot of sidewalks in this town that are difficult – some even impossible – to ride a wheelchair on. There are curb cuts that don’t really seem like curb cuts, and people leave trash cans and other heavy objects in the middle of the sidewalk, so that I am not able to navigate my chair any further until someone moves the object for me.

I have also discovered that while disability awareness has improved attitudes and perceptions that able-bodied people have toward those of us who use mobility devices, there is still much room for improvement. Every day I encounter those who talk down to me as if I were a child, who rush to do things for me without giving me a chance to do them myself, and who stare at me as those wondering why anyone would let someone like me out in public.

My reflections on how things were then and how things are now lead me to the conclusion that, yes, things are much better for people with disabilities than they once were. Changes in laws, in attitudes, and advances in technology have enabled us to live full and independent lives, as long as we can get the services we need, or are able to afford the technology that exists to help us in many areas. I am also keenly aware that those of us who work and/or advocate for disability rights and services cannot rest on our laurels. Although we have come far, we still have a long way to go. We must not stop advocating for funding, for advances in technology, for pubic accessibility, for improvement in employment opportunities, and other services and programs that will enable us to become fully independent and integrated into our community. We also need to continue to improve awareness, so that attitudes toward us can keep advancing. With all of us working together, we can enjoy a bright future for ourselves and geerations to come.

Write a Poem about CAL and Win!

Have you been touched by CAL? Tell us about it and win! We’re having a poetry contest this month. This is open to consumers, family members, supporters, friends and anyone who likes CAL and poetry. Submit your original four- to eight-line poems or stanza that reflects what you think about the work or mission of the Center. The top three winners will get a prize and the 1^st place poem will be entered by the Center for Accessible Living into the Heart & Soul Grant program. This year’s Heart & Soul grant program, put on by the CTK Foundation, is offering top winning organizations up to $10,000. Interested in what $10,000 would do for CAL consumers?

Go ahead and see, I’ll wait.

Not bad, right?

So, show us your talent. Here are the details:

Submissions must be an original four- to eight-line poem or stanza that reflects what you think about the work or mission of the Center for Accessible Living.

Submissions will be accepted until 9 pm March 24^th in one of three ways: Write it on CAL’s Facebook wall, put it in this blog’s comments or submit it via email.

Keep it clean and appropriate, please. Materials deemed inappropriate will be removed.

YOU vote! We will post all the submissions throughout the month on our Facebook page and you vote by “liking” your favorites. So watch our page this month and vote for your favorites. Winners will be chosen by your votes and CAL staff input.

Winning Prizes. Well, you’re all winners, but we at CAL understand a little incentive never hurts. So, here’s what we’re offering:

3^rd place: CAL T-shirt and your poem will be put on our website, calky.org.

2^nd place: CAL T-shirt and your poem will be put on our website, calky.org.

1^st place: Your poem will be submitted as CAL’s official entry in the Heart & Soul grant and put on our website, calky.org. You will also receive a messenger bag, water bottle and CAL T-shirt. Messenger bag and water bottle generously donated by one of our wonderful partner companies, Citi Cards.

So, get writing!

Photo Credit: Flickr