Statement Regarding Senator Paul and Disabilities

Senator Paul’s comments regarding people with disabilities and the assistance they receive that keep them a part of their community shows that Mr. Paul desperately needs to be educated on the facts.  Most people do not wake up in the morning and say to themselves, “Gee, I hope I get a disability today so that I can ‘game the system’.”  A large number of individuals who receive disability payments paid into that system themselves for a number of years, just like Social Security Retirement.  We in the disability community were dismayed to learn that our Senator made such insensitive remarks regarding the 874,000 individuals in Kentucky who have a disability. 

Fraud in disability programs is estimated to amount to less than 1 percent and is extremely rare, as the agency’s watchdog has found. Its inaccurate payments rate is also less than 1 percent. SSDI payments are far from comfortable, averaging $1,130 a month, just over the federal poverty line and usually replacing less than half of a beneficiary’s previous earnings. Very few beneficiaries are able to work and supplement that income: less than 17 percent worked at some point during the year in 2007, but less than 3 percent of those people made more than $10,000 annually.   People with disabilities do want to work but lack of affordable and accessible transportation, unfounded biases by employers, inaccessible work places, and continued stigma and negative stereotypes by the general public and elected officials are huge barriers to individuals with disabilities obtaining meaningful, gainful employment.

The Center for Accessible Living is an innovative leader in empowering all people to achieve their goal of independent living.  We work on a daily basis with people with disabilities helping them to achieve independence and be integrated into the community.  We invite Senator Paul to meet with us so that we may share our concerns and educate him on the day-to-day reality of people with disabilities and the discrimination they face every day. 

Keith Hosey

Associate Director, Center for Accessible Living

"Handicapped" Does not Define Me

- By Carrissa Johnson - 

I've always felt that knowledge is indeed power. Explanations are important for a person's growth, safety, and well-being. How many of us would follow basic laws if we didn't understand the reasoning behind them? Change doesn't happen for the sake of change. Everything evolves for reason. A good example of this is language. We are asked to drop words from our vocabulary because the meaning can change or seem offensive. I have read and heard many people talk about society becoming “too politically correct” with language. But have you ever stopped to actually analyze the reasons behind such change?

The word “handicapped ”is freely used in society to describe a person with a disability. I still see it daily used in signage and speech. As a person with a disability it upsets me. At times when I tried to explain my argument, people think I'm being too politically correct and that my feelings are hurt over “just a word .“ When you look up the definition, you can see the dictionary even coined it as “sometimes offensive.” Since I'm a person who believes knowledge is power, I would like to analyze the reasons for the offense so that maybe people will understand and will not categorize me as overly sensitive.  Some definitions talk about handicap as an advantage (game of golf) while others to talk about it as a disadvantage.

I know the first is used to describe a game. But I don't look at my disability as giving me an artificial advantage over others. My being able to park in a spot reserved for individuals with disabilities is not an advantage. (It sometimes can be a pain but that's another educational post).

The second definition talks about a disadvantage that makes achievement difficult. I've achieved a lot in my life, but no more than any other person: honors throughout my school career, and Master’s degree, my own home, employment, and a family. At times some of those things were difficult, but not because of my disability itself; only the attitudes and thoughts of others. On the contrary of that definition,  I consider myself very fortunate and blessed to have all of these things and to have my disability. It is a part of me. but only a part. I am more than my disability. It's not a secret that I can't walk but it doesn't have to hinder other activities. Personally I think most individuals with disabilities will tell you that they are working toward a goal and being fulfilled in their life. 

Some websites talk about Handicap being derived from “cap in hand,” a phrase associated with beggars and begging. Handicap should not be used to describe a disability. I have never begged for anything I have. I've achieved and been blessed. Again it does not fit.

Others refute the statement citing a story in the 1600s where the British monarchy used it to honor disabled veterans coming back from battle by removing their caps. Whichever side you take it doesn't describe all individuals with disabilities. (And I personally don't want to be saluted for having one.)

Armed with education what is appropriate? This way of thinking does not ask you to change your vocabulary every few years. Instead put the person first. That never goes out of style. I'm not handicapped. I'm a person with a disability. It is only a part of who I am just like eye color or a job title. It doesn't define me completely. Person first language is not just politically correct or an overly sensitive fad. It is the right thing to do. Just like I believe knowledge is power I believe most people are inherently good and do not want to offend another person. With that in mind, what will you do?

Disability Advocates Call ‘Glee’ Gun Portrayal ‘Poor Choice’. What do you think?

- By Keith Hosey -

Ok, so I missed this episode (it's on DVR), but apparently it was a controversial one. At first glance, I thought the title was about 'Artie' not actually being paralyzed. Poor choice in my book, nothing about us without us. I'm sure there were actors with paraplegia who would have liked that role. But apparently the article is about the character Becky Jackson, played by Actress Lauren Potter, bringing a gun to school. Lauren and her character both have Down Syndrome.

Potter’s mother, Robin Sinkhorn, told The Huffington Post that she took no issue with a character with Down syndrome being the one to bring a gun to school.

“If Becky’s going to be fully included on the show... then why not Becky?” Sinkhorn said. “Whether she has Down syndrome or not, it doesn’t matter … She’s a teenager. She makes stupid decisions just like other teenagers do. 

But not everyone feels the same way. Officials from the National Down Syndrome Society called it a “poor choice” to depict Becky bringing a gun to school.

Excerpt taken from: http://www.disabilityscoop.com/2013/04/12/disability-glee-poor-choice/17703/

I have to agree with Potter's mother. The disability community has been fighting, since before I was even born, for equality. We (and I use "we" with the utmost respect for those who came before me) have carefully crafted our messages, strategically chosen our fights and proudly claimed our own words of choice. We have fought societal prejudices that people with disabilities are broken, helpless, burdens, subhuman and outdated beliefs that people with disabilities are supposed to be grateful for charity and pity. We’ve made tremendous strides toward changing these perceptions through advocacy, education and legislation; public awareness campaigns and day-to-day interactions with the public. Justin Dart, Ed Roberts and others have shown the world that people with disabilities are able, capable, strong, independent, equal. They didn't want charity or pity, they demanded rights.

So when we reach a point where a hit TV show portrays a character with a disability doing something that any other character might be doing, good or bad, that is equality. This person isn't being portrayed poorly because of her disability. She's being portrayed poorly as any other kid in school, regardless of having a disability. Part of equality also means not putting people with disabilities on a pedestal. We're all human. You take the good, you take the bad and there you have... the facts of life.

If the disability community has a problem with 'Glee' maybe it should be about a non-disabled actor playing a character with a disability, instead of a character with a disability being portrayed as human.

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.

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.

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

Disability: Limitations or Opportunities?

- by guest blogger Stephanie Hickey -

I’ve been thinking a lot about how I came to be doing this blog and I have to give the credit to my mother. She never allowed me to feel sorry for myself. She never allowed me to dwell on what I couldn’t do. She helped me see what I could do.

I’ve had Cerebral Palsy since I was a toddler, so from a very early point in my life I knew there would be a lot of things physically beyond my reach. For instance, I will never be a great figure skater, like my idol Michelle Kwan. But my mother helped me to see that every single person --disabled or not--has dreams of achieving what he or she knows is beyond their reach. And we all know our dreams are always going to be just that--dreams. My mother stressed that although my physical world may be limited, my mental world was not and it was vaster than the physical world could ever be.

Taking that advice, I began to read a lot and I saw that my mother was right. Entire worlds opened up to me. I totally absorbed the characters and their realities, finding that I was capable of doing hundreds of things impossible to me in the “real” world through all these characters, these other realities. And I began to fall in love with words, discovering just what could be done with them. I wanted to create those different worlds. I wanted to manipulate words. I wanted to see just what I could accomplish with them, because--as my mother said--my mental world was not limited--and I could take that to any heights I wanted to take it.

From that point, I began to discover my talent. Of course I may sometimes still wistfully wish that I were capable of doing something I know is physically beyond my reach. However, this is mostly around the time of the Winter Olympics or skating’s World Championships when I see the skaters performing and am just blown away by their physical prowess. But my mother helped me learn to find what I could do instead of coveting someone else’s gifts and being resentful of what others could achieve.

So now here I am, writing. It became my passion and grew into something I love to do more than anything else. I might not have discovered this passion and nurtured it into a talent that has grown and continues to do so had it not been for my mother. Had it not been for her outlook, I might not see things as I see them now.

Sometimes what we see as limitations are anything but that--they are opportunities. They are chances to find things you never thought were in your power to do. Setbacks are not always setbacks. We just have to push ourselves to look hard to find the opportunity in the setback or limitation. And to my mother, for helping me learn how to do just that, I say thank you.

Photo Credit: Flickr

ADA, the beautiful!

- By Guest Blogger Pinalben "Pinky" Patel -

The Americans with Disabilities Act (ADA) has always been about giving equal access to people with disabilities. It was a bipartisan bill with great support from both parties and the president. Before the ADA, people with disabilities were not able to participate in the community unless they were rich enough to have a few attendants around all the time to lift them over steps or stairs to get into buildings.

My disability -- Friedreich's ataxia -- is degenerative so I was almost able-bodied before the days of the ADA. And I was only nine years old when the ADA came into law. I was born in India. My family and I came to the USA when I was four years old, but we had to go back to India when I was about 12 years old.

It was three years later in India when I realized the importance of the ADA. My disability had progressed and I couldn't walk with one person holding me anymore. I needed to use a wheelchair. Most schools around where I lived were a couple of stories high without elevators and they have seven or eight steps to the first floor without ramps! I had to drop out of school. Luckily my family got a chance to come back to the USA a couple of years later. I started school again after I got back, and today I am a writer with a journalism degree from Murray state University!

I know I would not have gotten to study if it weren't for the ADA. I am grateful to the people who pushed for the ADA to be signed into law. I can go to many places where I don't have to be lifted like stores, restaurants, theater. I remember the last time I was in India – where there is nothing equivalent to the ADA -- I did my shopping from the car. There was only one store I could go into but still had to be lifted for one step. That store had two floors and I didn't even get to go upstairs!

Yes, the accommodations required by the ADA make our lives easier. But there are so many more improvements to be made. It has been 20 years since the ADA and there are still many inaccessible places. Some politicians and candidates still want to exempt private businesses from the ADA requirements. That's not how it should be especially 20 years later – there are ways to retain a building's authenticity while making it accessible! Many architects still think that putting grab bars in bathroom stalls or changing rooms for able-bodied people would make them accessible! Those architects should spend a couple of days in a power wheelchair or consult with a wheelchair user before remodeling. Installation cost shouldn't be an issue for successful businesses such as independent restaurants, bakeries, or parlors so don't be afraid to complain if access is not available.

The ADA is a Central Civil Rights law for people with disabilities. We are a protected group of people and the largest minority in this country. In its 20 years, some politicians, the Supreme Court and others tried to weaken the ADA.

Even though the ADA has made it illegal to deny a job because of a disability, there are still far more educated, unemployed disabled people than able-bodied people. We need to keep fighting for our rights, and we need to stand up to the injustice and discrimination.

The ADA: 20 Years – My Hero

- By Keith Hosey -

“I submit that an individual who breaks a law that conscience tells him is unjust, and who willingly accepts the penalty of imprisonment in order to arouse the conscience of the community over its injustice, is in reality expressing the highest respect for law.” Martin Luther King, Jr.

Hello again readers. The Americans with Disabilities Act (ADA) will be twenty years old July 26th. I’ve been spending quite a bit of time thinking about this lately. This is our second installment in the Center’s ADA series. I’m at the National Council for Independent Living and it’s a great atmosphere for re-charging your advocacy batteries.

I want to tell you about one of my heroes. There are many advocates who worked towards disability rights. There was Ed Roberts, Justin Dart, Jr., and tons more. I want to tell you about a guy I’ve had the pleasure to meet, hear and be inspired by. The good news: he’s agreed to be part of our ADA series and already has a documentary about him.

If you’ve ever been on an accessible bus in Denver, Chicago, Louisville or a handful of other places, you can thank Arthur Campbell, Jr. for it. He stopped busses in those places to demand access, even before the ADA was law. This guy’s been arrested in more states fighting for your rights than I’ve probably visited. Humble? Well, not really, but he’s got a great sense of humor. Arthur was a member of a group arrested in the nation’s capitol building fighting for the rights of people with disabilities. That’s history in my opinion.

"Where would the blacks be if that poor, tired lady hadn't decided to fight back and not give up her seat on the bus?" asks Campbell. "It takes someone to make a stand, someone to say, 'I've had enough.' In our case, we can't even get on the bus, let alone ride in the back." Crashing their wheelchairs through police lines and manacling themselves to buses in acts of civil disobedience, Campbell and his fellow activists helped dramatize the need for access for people with disabilities. In one of the film's most stirring sequences, Campbell participates in a Washington, D.C. protest rally in which 70 disabled activists laboriously drag themselves up the steps of our nation's Capitol. Their efforts helped spur the passage of the Americans with Disabilities Act in 1990.” – Walter Brock, Documentary Film Maker – If I Can’t Do It

Arthur inspires me, he never stops. He fought for the ADA, then he saw the ADA signed in person. He is a part of American history and I am honored to know him.

Who inspires you?

Will Disabilities Exist in the Future?

- By Keith Hosey -

Lately I’ve been thinking about the future. I went to a meeting about a park that is planned for the eastern part of Metro Louisville, a very exciting and ambitious project. I think the people involved are on the right track and inclusion on all abilities is a priority. Most organizations have a five year plan; their vision is a hundred years plan. That got me thinking, will disabilities exist in the future?

Three reasons they might not:

1. Stem Cells. The science is in its infancy, but the applications seem to be out of this world. It promises to possibly help people with paralysis walk again, people with ocular diseases regenerate vision, and people with degenerative diseases fight back. Where will it take us? I’m not sure, but when I think about quality of life that it could create for millions of people… this thing seems to me like the best medical advance since penicillin.

2. Genome Sequencing / Gene Manipulation. Order up, we’re already doing it with our food. Imagine a world like the movie Gattica, where before you’re born the doctors can see what genes may cause a disease or disability. Will future Hosey generations have no worry of their children being born with severe bilateral club feet? Will we be able to cure congenital diseases before they exist?

3. Nano-Technology. The other night I saw a news piece on a Nanoknife: “It's not really a knife, but state-of-the-art technology to remove tumors that are considered inoperable. U of L Hospital is one of only twelve medical centers in the country to have the device.” Computer technology is getting smaller and more advanced, so it’s not out of the question that an army of nano-bots isn’t in medicine’s future.

Three reasons they might:

1. The have nots. In the movie “Gattica” the rich had access to gene manipulation and the poor had congenital disabilities and diseases. Take polio, the vaccine was invented in 1955. Dr. Jonas Salk refused to patent the vaccine, so it could be widely available to everyone who needs it. The last case of polio occurring in the US was in 1979 (not counting any cases that were brought to the US by foreign carriers or caused by the vaccine). Do you want to see what countries still have polio cases in 2010?

2. We’re getting older. Science and medicine has extended life expectancy well into people’s nineties (my grandma is 97 this year and goes on cruises). What about when we’re living to 120? There is a race between life expectancy and quality of that life. Stem cells could likely make a thirty year old in a wheelchair a sight of the past, but what about the hundred-and-thirty year old?

3. Cochlear Implants. There is a hot debate in the Deaf Community (capital D, culturally Deaf), which consists largely of Deaf people whose first language is American Sign Language. Many Deaf individuals don’t consider their hearing loss as a disability, rather it is a cultural heritage. The community is split on the issue, but there are some Deaf parents who would rather not get the implants for their children. Maybe to an outsider this doesn’t make too much sense. The debate has softened in the past few years, but there is a greater question of culture here. They feel it is an attack on their culture and heritage. I don’t know many people that wouldn’t readily “take the cure” if it were available, but there are some who identify their disability as a major part of who they are.

Did I miss an important list item? What do you think? Will Disabilities Exist in the Future?

Photo Credit: http://www.flickr.com/photos/stephenr/2275518435/

I'm disabled - not someone to look straight through

- by Guest Blogger, Stephanie Hickey -

I am, like a fair amount of people these days, looking for work. Until that time, I have to make do with my disability income. A few months ago when cashing my SSI check, the cashier commented, “You get this much money a month for sitting around and doing nothing? Wow!” The remark reminded me of an incident in high school. As part of the dress code, we were not allowed to wear tennis shoes. However, I had to wear braces on my feet and tennis shoes were the only shoes wide enough for the braces to fit in.

One of the girls did not like this and pitched a little fit. “Why does she get to wear tennis shoes?” I realized why, of course. I do not look visibly disabled--I’m not in a wheelchair or using a cane. More than a decade of therapy and seven operations helped me improve my condition a great deal. The assumption bothered me, as if I were receiving special treatment, as if I wouldn’t have gladly exchanged having to wear those irritating and painful braces (inside my tennis shoes) for a cute pair of dress shoes like everyone else had. I would’ve happily done so, just as I used the stairs instead of taking the elevator, which I could’ve easily obtained a pass to use.

I constantly encounter the attitude behind that remark. It’s the belief that people with disabilities get special privileges. From tennis shoes to the parking sticker to a free income, we get some things so easy? This is not the case. These things considered “privileges” are trivial in comparison to the reason we have them. While I don’t feel ashamed of my disability, I would gladly exchange bodies with a--for lack of a better word--healthy individual so that I’d have no use for these “luxuries”. I believe that many individuals with disabilities agree that these comforts are no real trade off for disability.

This is the kind of treatment I’ve seen people with disabilities get. If we are not forgotten or invisible to society, save the awkward stares, we get treated as inferior by a far majority of those lucky enough to be fully able. People with disabilities don’t get enough consideration in society or government. Not enough buildings are accessible and while there are programs to help people with disabilities, there could still be a lot more.

I’m not trying to make this a self-righteous diatribe, I’m just asking people to think before they speak. It’s truly as the saying goes: “You never know someone’s life until you walk a mile in their shoes.” And I’d readily trade you my shoes and my parking sticker if I could.

Photo Credit

What does the ADA mean to you?

The ADA: 20 Years

- By Keith Hosey -

Hello readers. The Americans with Disabilities Act (ADA) will be twenty years old in July. I’ve been spending quite a bit of time thinking about this lately. What does the ADA mean to me? Well, I’m certainly not as severely disabled as many people I know, who have probably been more affected by the ADA and could probably answer this question better. So what I thought, is that I’ll take some video this year to celebrate the ADA anniversary of people I know telling their stories and how the ADA has affected their lives. Please look for that in the coming few months.

The ADA is an essential piece of civil rights protection for people of all disabilities. While many groups have had civil rights for decades, people with disabilities were not guaranteed by law equal rights and protection from discrimination until 1990 (or later depending on the provision). While I’m a romantic at heart, I know the truth is that people with disabilities still fight daily across this great nation for their rights. Not special treatment (as the argument goes sometimes), equal access, equal rights. Rosa Parks fought in the 50s and 60s for the right to sit anywhere on the bus she wanted. ADAPT fought in the 80s for the right of people with disabilities to simply be able to get on, and ride a bus.

It was a wonderful bipartisan piece of legislation that has freed millions of Americans with disabilities and hundreds of thousands of Kentuckians with disabilities to live the American dream. These laws would not have passed without Senators and Congress people who believe that equality and human dignity should triumph above all.

The ADA is no done deal. The Americans with Disabilities Act Amendments Act (ADAAA) was enacted recently because the original ADA had been weakened so much in the area of employment by the courts, the legislature felt they needed to return disability rights to the original intention of the ADA. We still struggle for our rights. Let’s not forget those who have paved the way for us to keep fighting.

But, please, share: What does the ADA mean to you?

Note: I just learned that a Center for Independent Living in California asked Google to change their doodle on July 26th to celebrate the ADA. Google replied that the ADA is "not the type of event promoted on [its] home page."

And yet Google HAS changed its Doodle to reflect the anniversary of a constructed language called "Esperanto," Jacques Cousteau's 100th birthday, and the 30th anniversary of the Pac-Man video game! It is insulting to choose to celebrate a video game in lieu of a piece of civil rights legislation that has won new levels of freedom for the millions of Americans with disabilities. Please join their cause by asking Google to celebrate the ADA.

Photo Credit

Should disability be funny?

- by Keith Hosey -

South Park. The Family Guy. Glee. Fill in your own blank. There’s no shortage lately of comedies that have characters with disabilities. Depending on your age, you may have been told not to stare at people with disabilities. When I was growing up, I was told not to make fun of people different than myself.

Should we laugh at disability? I’d like to make myself clear… I believe teasing, taunting and mean spirited gestures have NO place in our world. But is there such thing as “good clean funny”? Sarah Palin was outraged at Family Guy when the character Chris dated a girl with Down Syndrome, but Andrea Friedman, the actress who voiced the girl has Down Syndrome herself and is an advocate for people with disabilities. Friedman said herself she felt a good sense of humor is healthy and that she positively portrayed a person with a disability.

I have to agree. Her cartoon character was independent and anything but stereotypical, which added to the comedy… and reality. If some groups should be left out of comedy how will they ever experience true equality? I think that, like the boom in stereotypical gay guys in 1990s, it "normalizes" the experience. I do believe that the growth in representation of gays in the 1990s helped that group experienced the growth in acceptance that it did in the ‘90s and ‘00s. It’s not all good and there is always room for more appropriate representations, but comedy and humor are natural extensions of life, they are equalizers. If you exempt a group from healthy ridicule, you exempt them from equality. But that's just my opinion.

What do you think? Should disability be funny?

Photo Credit: http://www.flickr.com/photos/roogi/242676084/

Should Hidden Disabilities Be On Your ID?

(Photo Credit: http://www.flickr.com/photos/psit/2247782231/)

- by Barbara Davis -

While searching through the Fox News website yesterday, I found an article about attempts by Georgia legislators to make it possible for people with Post Traumatic Stress Disorder (PTSD) to voluntarily have this diagnosis placed on their driver’s license. The reasoning behind it is to ensure the safety of officers who pull people over: supposedly the PTSD designation on the license will prepare the officer in the event of violent or unexpected behavior.

My first reaction to the article was, “Who would voluntarily have this diagnosis on their license, and why would they?” My second reaction was that if the purpose of the PTSD diagnosis on the license is to prepare officers for the unexpected, wouldn’t it be a little late by the time they got close enough to the person to look at the license? Thirdly, I tried to think of an upside to voluntarily having this diagnosis on a license, and couldn’t think of a single one. I could, however, think of quite a few downsides.

I once had a driver’s license in the state of Florida. It was a restricted license. The two restrictions were that I must wear hearing aids at all times, and that I must wear eye glasses at all times. These seem like innocent enough statements on a license, but the reactions the first one evoked made me glad to move to a state that left those restrictions off.

I can still remember how the scenario usually went when asked to show ID in those Florida days. I would walk into a bar/restaurant and be greeted in a tone of voice adults reserve for other adults. Once the host/hostess saw my license, I was suddenly talked to like I was in kindergarten and couldn’t find my way home. He/she would also address me in a very loud voice. This distorted the person’s lip movements and made it impossible for me to understand what was being said. I always ended up feeling frustrated, embarrassed and uncomfortable. Needless to say, it put quite a damper on any fun I was planning to have.

If I got this kind of reaction with a hearing loss reveal on the license, I can only imagine what a PTSD reveal could do. I can picture being asked to leave, or being constantly scrutinized in case my behavior became erratic. I can also imagine that a bartender would be reluctant to serve me alcohol due to misconceptions about this disability.

In a world where we have to show ID for nearly everything, life could get really complicated if a PTSD diagnosis was listed on my license. I don’t want to think about the kind of reaction I would get if I tried to board an airplane, apply for admission to a college or university, or attend a meeting in a school, hospital or elsewhere. Plus, in my job search, I would automatically reveal my disability on the job, since I would have to show ID once hired.

I can understand first responders wanting to protect themselves from potentially dangerous situations. But it seems to me it would be much more effective to become educated about PTSD, and to always be prepared to deal with the unexpected, no matter what the circumstances. Asking people to voluntarily disclose a disability on their driver’s license is not only ineffective, it can potentially cause all kinds of problems for the person with a disability.

Social Justice is Everybody’s Issue - Part 2

- by Keith Hosey -

When I posted Social Justice is Everybody’s Issue (please read it if you haven't) the point I wanted to make was that Rosetta Thurman is right-on about allies being essential in social justice. I’m not the greatest writer and I realize I got sidetracked a bit and said “we all get complacent sometimes.” I was shortsighted here in using the word complacent. I don’t use any mobility devices, I’m not limited in my communication or my sight. I have some physical limitations, but they are not near as severe as many people I know. I have been an active civil rights advocate for seven years only – because before I worked at the Center, I never really knew of, or thought about, the inequities in our society that are presented every day to people with severe disabilities, even though I myself have a mild physical impairment.

My point here is this. I am relatively new to disability rights and while I choose, or not choose, to shop somewhere because of access, it’s a choice. When I get tired, when it’s ultimately more convenient to walk over that inaccessible threshold, I can. Sometimes I forget this. Then I read about Glenda Watson Hyatt not making her Duet with Chris Brogan at SOBCon (a conference for Successful and Outstanding Bloggers) because the bar wasn’t accessible. She wrote a great post about it and said, “The group left for the Blue Frog. I went back to the hotel to go bed, disappointed. In that moment, inaccessibility wasn’t about the law, my rights, or me being part of an under tapped market. In that moment, it was about missing the opportunity to do something crazy and unexpected with someone I admire, respect and trust.”

I thought why not fight? I thought about the situation for a whole day. I have been an active civil rights advocate for seven years only – Glenda has been an active civil rights advocate for decades. When she gets tired of fighting, when it’s ultimately more convenient to walk over that inaccessible threshold, she can’t. So if Glenda wants to pick her fights, I'm all for it. And this is why Rosetta’s “allies” are so important. Yes, we people with disabilities need to stand up for our rights, but we need to find those who will help us in that fight. Fortunately Glenda has many allies (she calls disciples) to contact the Blue Frog’s Facebook page and complain. J

A Mothers Day Tribute

- By Barbara Davis -

In honor of the upcoming Mothers Day, I wanted to include a tribute to mothers with spinal cord injuries. Instead, I spent 2 hours searching the internet only to find voluminous scientific articles on pregnancy and SCI, and pages of articles devoted to quadriplegic parents –mothers and fathers—who are fighting for custody of their children just because they have a disability; not because they have done anything neglectful or abusive.

For many years I have worked with people with disabilities. Some of these were parents. Many of them displayed amazing adaptability and incredible love. There were also some who didn’t know how to be a parent. As a result, there were issues that had nothing to do with the disability.

The non-disabled parent population also comes in those who know how to parent effectively and those who don’t.

I would love to see the day come when I can search for tributes to mothers with disabilities and find some immediately. After all, the internet is loaded with Mothers Day tributes to non-disabled mothers.

It would also be wonderful if people would stop automatically assuming that a person with a disability cannot be a good parent because of the disability.

Being a good parent isn’t about whether you have hands to change a diaper with. There are all kinds of adaptations for that and any other parenting task. Being a good parent takes love, maturity, responsibility and flexibility, among other qualities. People with disabilities are totally capable of learning how to adapt the parenting tasks. They are equally capable of loving their children and keeping them safe, healthy and happy.

Children of parents with disabilities can and do grow up to be healthy, happy and well-adjusted. What better tribute is there that that?

Disability Disclosure - What do you think?

To Disclose or Not to Disclose – Part Two - By Keith Hosey

Hidden Disabilities

I know that people with psychiatric disabilities are often very apprehensive about disclosing their disabilities due to the societal stigmas that continue to be unfairly associated with various mental illnesses. I read an article about three months ago written by a guest commentator with bipolar disorder about his experiences in employment. He wrote, “Maybe I would have lost the job if I had disclosed. I did anyway because my behavior… I do not walk up to people and say ‘Hi, I have bipolar disorder.’ For myself there is a time and place for disclosure.”

I believe the time and place for disclosure on the job is when your disability is affecting your performance. This is really a good rule for disclosure for anyone whose employer doesn’t know they have a disability; not just those with psychiatric disorders. So, if you need an accommodation you should disclose your disability to your employer. As the author stated, though he had fears related to disclosure he lost the job anyway because he didn’t get an accommodation to help him successfully do his job. If you feel your immediate supervisor won’t understand, Human Resources should know how to respond to your request. The Americans wit Disabilities Act (ADA), and now the Genetic Information Nondiscrimination Act (GINA), protects you from discrimination based on an employer’s knowledge about your health conditions and disabilities.

In all disclosure situations it’s a personal choice of where and how you do it. What are your thoughts on disclosing disability in the workplace?

Additional Note:

One big misconception I hear often is that you can’t ask for an accommodation after you’ve been on the job for some amount of time. That’s just not true whether you have a hidden or visible disability. You may ask for an accommodation anytime from the application process through the entire span of your employment. If you work at a company for thirty years and on year thirty and a day, you decide you need an accommodation, that company is obligated to begin the accommodation process.

2010 SCHOLARSHIP ANNOUNCEMENT

Through the Looking Glass and its National Center for Parents with Disabilities and their Families are pleased to announce new scholarships specifically for high school seniors and college students who have parents with disabilities. A total of ten $1000 scholarships will be given out Fall 2010. These scholarships are part of Through the Looking Glass’ National Center for Parents with Disabilities and their Families. Please note that the 2010 awards have different application procedures than previous years. There are separate scholarship awards for high school seniors and for college students, and each has separate eligibility requirements:

1. High School Seniors. To be eligible, a student must be a high school graduate (or graduating senior) by Summer 2010, planning to attend a two-year or four-year college in Fall 2010 in pursuit of an AA, BA or BS degree, and have at least one parent with a disability.

2. College Students. To be eligible, a student must be currently enrolled in a two-year or four-year college in Fall 2010 in pursuit of an AA, BA or BS degree, be 21 years of age or younger as of March 1, 2010, and have at least one parent with a disability.

All application materials must be postmarked by March 1, 2010. Individuals may submit only one application per award period.

Selection criteria for all scholarships include academic performance, community activities and service, letter of recommendation and an essay describing the experience of growing up with a parent with a disability.

Please go to our website: http://www.lookingglass.org for more information, including the application form, complete application directions and an FAQ page that answers many common questions as well as offers helpful suggestions.

New Year's Resolution

By Keith Hosey

A new year means new promises to ourselves. Like many people, I often make new years resolutions and try to stick to it for more than two months. This year’s resolutions are probably similar to those many other people make, I want to eat healthier, exercise more, try to simplify my crazy life a little. As we start a new decade, I ask those whose lives or loved ones’ lives are touched by disability to make a resolution with me.

That resolution is: Make your voice heard.

Our federal representatives are currently debating a health reform bill in Washington that will affect people with disabilities, for the better hopefully. The Kentucky legislature 2010 session just started and among other important pieces of legislature, they will be debating how to fill a gaping hole in the state budget. Kentuckians with disabilities will be affected by what they decide. People with disabilities represent the largest political minority in America and Kentucky. Historically, this is a group that doesn’t necessarily flex that political power.

So, please make your voice heard! Here is a good guide for keeping up with and contacting your legislators: http://www.calky.org/news.html#Legislative

Also, here’s a message I received from Kentucky’s LRC this week:

The Legislative Research Commission (LRC), invites members of the public to attend legislative committee meetings and floor sessions while lawmakers are at the State Capitol for the General Assembly's 2010 session, however, there are ways for citizens to stay in touch with the legislative process even if they can't make the trip to Frankfort.

The Kentucky Legislature Web Page is updated daily to give citizens the latest updates, bill summaries, amendments, and resolutions as well as each bill's status and the next day's committee-meeting schedule and agendas.

The site also provides Kentucky's senators' and representatives' phone numbers, addresses, and legislative committee assignments. Toll-free phone lines help citizens across the state follow legislative action and offer their input.

People who want to give lawmakers feedback can do so by calling the Legislative Message Line at (800) 372-7181. A Spanish Line is (866) 840-6574, and anyone with a hearing impairment can use the TTY Message Line at (800) 896-0305.

A taped message containing information on the daily schedule for legislative committee meetings is available by calling the Legislative Calendar Line at (800) 633-9650. Information on the status of each bill being considered is available on the Bill Status Line, (866) 840-2835 or by signing up for Bill Watch.