YES! I Feel Empowered

Upon opening a fortune cookie I read, "A different world cannot be made by indifferent people." I know one person that embodies this phrase more than any other individual I have ever met--Donna Fox.

I met her through the YES! Group Young Empowered Self Advocates, sponsored through Louisville Metro Arc and the Center for Accessible Living. She came on as my Co-leader. And it is through her that the group has most flourished and grown bigger than I could ever have dreamed. Her work with YES! is just one of her jobs, but it is wrong to call it a job--for Donna, YES! is a calling. She embraces our mission of educating and empowering young people with physical and developmental disabilities to see beyond any barriers, whether they are imposed by society or ourselves, and she sees no limit for YES!  I don't think the word "limit" exists in Donna's vocabulary. And she works tirelessly to see that world come to light with every waking moment.

This past Thursday, the YES! Group had its 2015 "YES! We Have Talent!" Talent show. For those reading the CAL Blog, if you were unable to attend, you missed an extraordinary show, which was mainly the production of my extraordinary Co-leader, Donna Fox. To see so many new members participating and to see young people who barely spoke when I first joined the group as a Mentor years ago perform (and with mountains of confidence) in front of a large crowd of family, friends, and YES! supporters, filled me with more emotion than I can express in words. And I will say again that the credit I can take for it is small in comparison to what Donna has done.

I suppose I could list Donna's jobs, likes and hobbies (She loves her dogs, her family, and is now a proud grandmother.), but I think it is more important to again emphasize how she does make the world different by being a person who refuses to be indifferent. Even as her Co-leader, she has helped me to see myself in a better light and approach the world with more optimism. I could write pages and pages of adjectives to describe Donna: buoyant, energetic, strong, fearless, passionate, but it has been and is seeing her through YES! that best describes her commitment to a world without barriers, a world in which we all see ourselves as the strong, capable, and exceptional human beings she has pushed us all to be.

I want to thank you, Donna Fox, on behalf of the YES! Group and on a personal note. Your efforts have not gone unnoticed. They are written concretely in the heart of every YES! member and YES! parent. And they are most certainly etched in my heart. I know I've thanked you before, but I wanted to put it words, how incredible I think you are and how blessed we all are to have you in our lives.

- By Stephanie Hickey

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

Let's stop talking about what Kanye did

...and talk more about WHY he did it.  

If you are angry because Kanye "picked on" a person with a disability or because he singled both of them out (there was also a lady with a prosthetic leg), you might be missing the bigger picture. 

We need to talk about the root of the problem. He stopped his concert for three minutes until the person was forced to "prove" that he was "disabled enough" to not obey the command. And while Kanye has been publicly chastised for it, that act of ableism seems okay to many, many people on a smaller scale in public settings every day. Disagree? Well, have you ever questioned (aloud or in your head) someone who "doesn't look disabled" in an accessible parking space? That's ableism. 

It's the self righteousness attitude of able-bodied people who think they're the "disability police." So many people with disabilities face never ending confrontations and challenges to their rights in their daily public lives: The person with fibromyalgia who gets hassled every time he legally parks in an accessible parking space; the person with the CP or Spina Bifida that can stand for very short periods of time out of their wheelchair who are challenged as "fakers" if they ever get out of that chair in public; the lady at Kanye's concert who had to detach her prosthetic leg and hold it in the air to prove she was allowed to sit down at a public event. 

Why does anyone feel they have the right to demand proof of disability from other people in public situations? AND what about the people at Kanye's concert who had invisible disabilities that might have stopped them from standing for long periods of times. Would they have been publicly shamed until they were forced to stand? 

This is an all too common public opinion that people with disabilities have an "onus of proof" on themselves in order to access the services or things that they need to function in the community. That attitude is more disabling than any disability. 

We as a society need to stop assuming that "everyone else can do everything that I can do" because we ALL have different abilities (disability or not) and not every disability is visible.

By Keith Hosey

Image used with permission. 

Compassion, Love and Reality Checks - A conversation on Mental Illness and Suicide

By Barbara Louise Davis

    As a person who has survived the suicides of my mother, spouse and an uncle, news of Robin William’s death reminded me of the guilt, confusion, anger and compassion I felt in those times. It took years to get to the compassion, and longer to lose the feelings of blame. Some of this happened through therapy; some as a result of working with CAL’s consumers with mental and physical disabilities over the last 30 years. Lessons I have learned are shared below:

Mental illness is nothing to be ashamed of.

    I’m not ashamed of having depression and PTSD.  I’ve taught my son not to be ashamed of mental illness, and to seek treatment when or if needed. Sadly, not everyone feels this way. There is still a lot of stigma attached to mental illness, which causes some not to seek treatment. We need to open our minds and have dialogs with our children and others in order to lessen this stigma.

Budget cuts make getting help difficult.

    Services to those who are poor and/or living with a physical or mental disability are usually first to be cut. A relative is currently trying his best to get services for mental illness, only to have doors shut in his face constantly due to lack of funding,  The frustration he is experiencing as he seeks help is worsening his condition. Sadly, in my years of working with individuals who are mentally ill, I have seen this often.

Love isn’t always enough.

    Robin William’s daughter expressed the thought that she would never understand why, when he was so loved, he couldn’t stay. For many years I felt this way about my mother. She too, was much-beloved. I also wondered why she didn’t love us enough to stay. It took me years to understand that she probably lived as long as she did because she was so much loved. I now understand, too, that she loved us all very much. Unfortunately, there came a time when the emotional pain was so overwhelming it over-rode all rational thought and made it impossible for her to think about anything but ending the pain.

You can lead a horse to water, but you can’t make him drink.

    Sometimes we grow frustrated trying to get a mentally ill individual to take medications, seek therapy, hospitalization, or join a support group. People can be quick to pass harsh judgments on those who don’t do what needs to be done to “get better.” In truth, mental illness can render a person physically debilitated. There are fears of financial burdens, of being overwhelmed by paperwork, “telephone tag”, the general run-around that can accompany a quest for services, and being stigmatized by others. We can help by being patient and encouraging, by offering help with some of the phone calls and paperwork if needed, and by refraining from showing annoyance or frustration if the individual isn’t acting as quickly as we would like. We should realize that, as a psychiatrist once said to me, “The only suicide we can prevent is our own.” I share this not to discourage one from doing whatever can be done to get the person help, but so that survivors can understand they did not fail, and are not to blame. There is only so much we can do; the rest is up to the person with mental illness.

THIRTY YEARS WITH CAL

By Barbara Louise Davis

   I started at the Center for Accessible Living as a secretary on June 4, 1984. Since then my involvement with CAL has taken a lot of twists and turns: sometimes as paid staff, sometimes as a volunteer, and at other times as both a volunteer and a paid consultant. I’ve learned a lot during those thirty years. Below are some of the changes I’ve seen and things I’ve learned.

Many People Can Fit in a Very Tight Space

We were in the Interchange Building on 8^th and Jefferson in 1984.  There was a staff of 11 people. The bookkeeper’s office was in the closet, six people were almost on top of each other in one small room, and the peer support/counseling office was also the library. Despite the small staff and shortage of office space, programs and services provided were: housing, advocacy, ramp building, independent living skills training, individual and group counseling, peer support mentoring, loan closet and information and referral. There have been several moves since, as our office staff and range of programs and services have expanded.

It Takes a Village to Change a Law, But One Person’s Vote DOES Count

CAL has always had an active part in systems change. Its staff, volunteers and voting consumers have worked tirelessly to get the Attendant Care Program funded, to improve transportation services, to get more funding for ramp building, housing, and other programs, and to educate consumers on the fact that their one vote does make a difference. When I first started at CAL, I saw consumer groups that worked very hard and successfully to get a bill passed to fund the Attendant Care program. Through the years I have been a witness to how much a difference it can make when voters call in to their representative to voice their desire for passage or failure of a particular bill. There have been a number of instances in these campaigns where a bill passed or failed by one vote.

Accommodations Can Be Simple and Inexpensive

At CAL the majority of the staff is comprised of individuals with physical, mental and learning disabilities. Accommodations are a way of life here. I’ve seen them range from something as simple as a string across a door, a few blocks under the legs of a desk, a large font size on printed material and comfortable office chairs for those with back problems. As technology has advanced, it has been easier for CAL to provide accommodations such as televisions and telephones with close-captioning, video relay, telephones with built-in amplifiers, software programs for those who are blind and visually impaired, and other types of accommodations.

We Will Never Give Up

There have been many gains and losses in disability rights, program funding and community services throughout the years of my involvement with CAL. Often something we have fought hard to achieve has either been taken away or has come close to being taken away. At other times CAL staff, consumers and volunteer have worked to fight what appeared to be a losing battle but ended up being a winning one. Throughout it all, we have never given up. As a result, the disability community and CAL as a whole have come a long way in thirty years. We know, however, that there is still much room for improvement, and so will continue to advocate for change when needed.

Teamwork Gets More Done

When we had a staff of 11, we provided a lot of programs and services. About a year after I started, the staff was cut to 8, and we provided those same services. We did this by pulling together and doubling up. Since then, there have been a lot of times when funding ended for a program or programs, and staff has had to once again pull together and double up to continue providing services. I have worked in a lot of places before I came to CAL, and never have I seen an organization that has teamwork like CAL does.

Old Dogs Can Learn New Tricks

Consumers who become newly disabled frequently come to CAL thinking they could not adjust to life as a person with a disability “at my age.” The reality is, with a positive attitude, a willingness to embrace technology and ability to try some creative adaptations, it is possible for anyone at any age to live a full, satisfying life with a disability. Will it be perfect? Probably not; but then, life as an able-bodied person isn’t perfect, either.

    A lot of things have changed at CAL in thirty years. We’ve gone from a small office in Louisville to a much larger office in Louisville, a satellite office in Murray, and a new satellite office in Northern KY. There was no First Impressions Suit Closet, employment program or consumer resource room.

    Technological advances have had a huge impact on how things are done at CAL now. We didn’t have a fax machine, paper folder and a computer at every staff member’s desk in 1984. We couldn’t apply for grants through the Internet or help consumers apply for jobs via Internet then, either. There was no web site, blog or electronic mailings, and nobody on the staff had cell phones.

    Staff members have come and gone since June 1984. We remember many of them with a fond heart. Most of all, we remember Elaine Zwicker and Angela Casey, who left this world way too soon.

     The last thirty years with CAL has been a wild ride. The next thirty years should bring about even more wonderful changes for CAL and the disability community. Thanks to all of our supporters & consumers for making us what we are today!

Image credit: https://www.flickr.com/photos/74159755@N00/4093225806/ 

What Do We Really See In the Mirror?

"No one can make you feel inferior without your consent." First Lady Eleanor Roosevelt said that. What she's saying is that no one can make you feel bad about you unless you listen to their negative comments. Not to disagree with the fine and great Mrs. Roosevelt, but she is not completely right. Yes, if we chose to focus only on the bad comments listen to the bad comments alone, then we are consenting to feel inferior.

But what I want to say is that I do feel people have the POWER to make us give our consent, especially through repetition and persistence. If a comment is said, no matter how off-hand or however well-intended, and even if we recognize it as negative and choose to shrug it off, it plants seeds of doubt. Here’s an example to which everyone can relate. You think you look good in particular clothes and wear them often. What if someone said, "I'm surprised you're wearing that. It is not flattering."  "Are you sure you don't want to change?" You ignore them, because you like those clothes and choose to wear them on another occasion; they say, "You're wearing that again? I told you it's not very flattering to your body." Even if you dismiss them again, the seed of self-doubt has been planted. "Do I really not look good in this?" You question yourself. And that seed grows. "What OTHER clothes do I really NOT look good in?" "Do I not look good in any of these things because I am fat?" "Does no one want to tell me that?" So see, you start to question yourself. You start to over think and before you know
it, you begin to feel inferior--with or without your consent.

As individuals with disabilities, a lot of people tell us things “for our own good” And some of us are born not seeing barriers. We are always thinking. "Why CAN'T I do this?" if someone says, "You can't do that!" Some of us have that attitude pushed on us by loved ones until we adopt it as our own. And some of us do see barriers. I'll admit that I used to, even though I played the "can-do-girl" for my family. I eventually grew into her. And this Roosevelt quote was one of my favorites because I thought, "This is true, and I'm not letting anyone make me feel INFERIOR." For the most part, I live up to my word, but there are times, I let those seeds get to me. And what I am wondering is for other individuals with disabilities still growing into their "can-do" or "no-barriers" attitude, how much do those "for-their-own-good" comments grow into seeds of self doubt that become poisonous and regress their growth. So, “for their own good”, be quiet and let us grow.

- By Stephanie Hickey - 

Image Credit: https://flic.kr/p/9hcV4h 

BORN in the U.S.A.

By Stephanie Hickey

     In the1980s, Bruce Springsteen wrote a song called "Born in the U.S.A."  On the surface it's a fist-pumping, sing-at-the-top-of-your-lungs anthem, affirming that America is the greatest country in the world and to serve and protect it is the greatest honor.  But if you get past the energy of the song and listen to the lyrics, you find the truth: a soldier fights for his country; he does his duty, but he doesn't come home to glory or respect. Instead, he comes home and cannot find a job or keep his home. He comes home to end up on the streets.

    It doesn't seem like things have changed much today. Everyone is crying, "Support our troops!" and decorating our doors and car bumpers with yellow ribbons. But do we really support our troops? I don't think that we do.

    Our troops are young men and women who risk their lives to protect the freedoms and principles we cherish. We readily support them from afar, but how do we treat them when they come home? It seems to be no problem to expand our military budget, but when it comes to government assistance, it is a problem. We don't want to help freeloaders. Many soldiers are coming home wounded, amputated and disabled in the age of IEDs. They want to work, and are not looking for handouts. They only want assistance needed to get their lives back on track.

    This is just the tip of the iceberg. There is a much less-talked about problem plaguing our troops. Many soldiers come home and suffer from Post-Traumatic Stress Disorder (PTSD). It seems to me that the "Support our troops" motto gets quiet and leaves these troops struggling to survive. Much stigma is placed on mental disorders that it's no wonder veterans with PTSD feel such shame. The current statistic stands that every 22 seconds a veteran takes his or her own life.

    War is not killing our soldiers en mass. Shame is. Our veterans come home to fight an hidden war. The enemies they face are mental demons--emotional IEDs. Are we, who shout rallying cries while they are away from the home front, rallying for them when they are back on the home front? Or are we reaching out to them to offer help?

    I want to see politicians who love to plug how much they love soldiers put into fruition laws that truly help troops. It would be wonderful to have more funding for programs and services that support our veterans as they return to their lives on the home front.

    Let's stop singing, "Support our troops" and start doing it.

Photo Credit: U.S. Army, https://flic.kr/p/fpNkEc 

What We Need from Our Allies

Allies

Allies are people who consider themselves to be not disabled and who want to help us to achieve our liberation ourselves and not on our behalf. A special group of allies are the parents, children, friends, lovers, and spouses of people with disabilities who themselves suffer much of the oppression by "connection." Also our allies are people who have chosen a professional interest in disability. Historically some of these people have been put into roles, which are oppressive to us. This does not negate their alliance or potential alliance. Our natural allies include all members of other oppressed groups.

What We Need from Our Allies

1. We need people who consider themselves non-disabled to explore their feelings about their bodies, (the ways they learn and think differently), their experiences of being ill, of being made to feel "different" in any way, of their reactions to people with disabilities, and of their fear of becoming physically less able themselves.

 2. We need listening while we express our hopelessness, pain and frustrations. (Only when we have thoroughly discharged these feelings will we be able to move successfully to a thorough celebration of ourselves and our lives.)

*Remember that the expression of feelings is not the "hurt", it is simply the expression of the hurt. We have all felt hurt and never showed it to anyone. Part of humans' natural healing ability is expressing feelings to another who listens with respect and patience, not needing to "fix" us or hurry us off our feelings. It is a powerful gift to let someone be honest about how they are feeling without judgment, in confidence, knowing the sharing is the healing. 

3. We need our internalized oppression interrupted. This may mean recognizing it when we do not.

*(Interrupt us if we speak degrading about ourselves or expect too little accommodation for our disabilities. Remind us that it is the oppression talking or preventing us from taking action. Encourage us to "act outside the oppression" by speaking well about ourselves and each other, by acting boldly and powerfully, by taking ourselves seriously.) 

4. We need support to love and encourage each other to tackle our own goals, ideas, and dreams; i.e., our counselors, family, and friends must not collude with any patterned divisiveness between us or act on their own feelings of being "left out."

5. We need to be touched lovingly and with awareness in order to contradict the massive invalidations we have been given of our bodies.

6. We need to have the highest expectations made of us.

7. We need to have our allies join with us in our demand to be included in all events which at present means solving the problem of access (for example):

A. By making all venues accessible to people with mobility-impairments;

B. By the provision of sign-language interpreters whenever necessary;

C. By making literature and important information available to people with visual disabilities; and

D. By not wearing strongly scented perfumes, deodorants, hair sprays, after- shave, etc.

Liberation 

Our liberation will require the challenging of all facets of our oppression, and in particular the resulting internalized oppression, i.e., coming together, noticing how we feel about it and expressing that to others; and overcoming any divisiveness between us; recognizing the cause of our mistreatment as oppression; recognizing our right to exist, to have feelings, to be loved and to love; to participate fully in society and particularly in controlling our own lives, making allies and being allies to all other oppressed groups.

- Excerpt Taken from Arizona Bridges for Indepenent Living (ABIL) Peer Mentor Training Manual

CAL VOLUNTEER SPOTLIGHT: ED KIRBY

Ed Kirby, an Army veteran and former firefighter, is currently a volunteer for the First Impression Suit Closet in Louisville. He came to CAL five years ago and is responsible for day-to-day operations of the suit closet, including maintaining inventory, collecting donations and scheduling consumer fittings.

Ed takes his duties of helping consumers look their best for job interviews very seriously. He says he wants to prepare each day to help himself be compassionate and understanding, because he wants every consumer to feel important, no matter who they are. He loves getting the chance every day to work with some of the most amazing people who have faced the same challenges he has.

While describing himself as loyal to a fault, friendly and compassionate, he also acknowledges he loves being at home. Some of his favorite TV shows include NCI S, Blue Bloods, and Person of Interest. He has an interest in sports. He also enjoys reading a daily reflection called "Faith to Faith". Ed can never leave his apartment without hope, gratefulness and compassion for his fellow man.

Muhammad Ali is a celebrity Ed once met. He would also like to have met Nelson Mandela and his grandfather together because "they cast a big shadow" for the rest of the world. If given a time machine, he would like to explore the Industrial Revolution.

Ed is exactly the type of person we are grateful to have on our team. CAL staff says "thank you" for all that he does.

"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?

Haters Keep Hating and We All Lose

- By Stephanie Hickey -

I’ve rallied, advocated, and some may even say ranted against people using the word retarded. I’ve argued that given the multitude of words available to us, we can say so many alternatives to the cruel and hurtful “r” word. But our culture is so saturated with the word—it’s used in movies, television, music and books—so much so that the “r” will cross a person’s tongue thoughtlessly, with no regard for how truly hurtful it is to others.

What do I do when a person says it to me? Do I endlessly berate them? Shun them? Equally hurt or humiliate them? You know what happens when people are lectured too much? They stop listening to what you saying. They may become even more inclined to do what you don’t want them to do out of spite. So what do I do when someone says the “r” word to me? I say, “That’s a hurtful word to me.” And then I forgive them. That’s right: I forgive them. I fight the “r” word with forgiveness as much as I do advocacy.

So why is there no forgiveness for Paula Deen? The word she used is atrocious, disgusting, appalling, and all other negative labels you can attach to it. So she has lost all the respect she once carried; her livelihood is shambled, and her good name has been destroyed. And still there are editorials, blogs, and comedians continuing to flog her. I am not condoning her conduct, but two points. For one thing, she said the word thirty years ago, a time in which (no justifying it) the—we all know what she said, so I won’t allude to it—saturated our culture as much as the word retard permeates our society today. And two: her use of the word was taken out of context. She said the word in the heat of a moment, in a peak of anger. A nasty truth about human beings is that when we are angry at an individual, we want to say something that will hurt them the most. We want to go for the jugular. We want to call a disabled person a retard or retarded or we want to call an African American that dreadful word. Even if the word never flows out of our mouths, we—if we are being truly honest with ourselves--want to say it, because we want to hurt them.

Why do we do this? Because we are human beings, flawed creatures who make mistakes. So why is the public still crying for more of Paula Deen’s blood? When someone is mean to their child, do parents teach these children to be mean back? Do they teach to keep hate going? I can’t speak for all parents, but mine taught to forgive. Forgiveness is the hard road to take, I know, but I believe it is more productive than hate. So for all that say the “r” word to you, forgive them. And for all of you still trying to chastise Paula Deen, give it up already. Enough is enough.

What's Wrong with Disability?

"What's wrong with you?" "Oh no, what happened?" are questions that I get more often now. From long time acquaintances, causal friends, complete strangers. They all seem ask when they notice it.

I started wearing a leg brace two years ago on my right leg due to my club feet. As a kid, I resisted leg braces. I hoped for the least intrusive looking so that others didn't notice them (clear plastic was my favorite). But at this point in my life, big metal bars on my shoes are fine as long as they help me. I was ready for the assistive device, but I haven't been ready for the questions.

Ironically, I feel I answer children much better than adults. But they first ask, "Why do you wear that?" I say "it helps me walk" and THEN they ask "What's wrong with you?" It's simply curiosity. The brace doesn't automatically invoke "What's wrong" like in an adult. The child is not steeped in the cultural bias that different is not “normal,” that it is bad or "wrong." To children I am happy to explain that all people are made differently and that while he/she may walk in sneakers, I need pieces of metal on my shoes to walk. I enjoy these conversations because it often helps to "normalizes" my disability - and others - for the child.

But with adults, I am often caught off guard by the question. I often deflect, defer or minimize the situation. I generally don't want to explain decades of a diagnosis that I have explained countless times before to everyone I meet. Instead, I should be able to have a conversation about language, differences and disability.

Nothing is "wrong" with me. Disability is natural. And by that, I mean: Disability is a natural part of the human experience. If you don't have one now, live long enough and you will. There have always been people with disabilities and there will always be people with disabilities.

What is “wrong” is referring to disability and differences as “wrong” or bad. It’s a term that I and countless others have heard all our lives and it hurts sometimes. It hurts children because they begin to believe that they’re broken. It hurts many adults, too, because they feel like outsiders always being quizzed and questioned as to their worth. It hurts our whole community because language is insinuating that a whole group of people are inherently unwanted, bad, and broken... "wrong." 

My legs simply work differently than yours. Different doesn't mean wrong. It's just not part of your non-disabled, majority view of "normal." I have a congenital disability and I happen to use an assistive device to help me walk. Do you have glasses? Similar concept. What if everyone ran up to you, pointed to your glasses and shouted, "Oh no! What's wrong with you?" How would that feel?

When you meet someone with a different hair color, religion, height, or skin color do you ask them “What’s wrong with you?” There are many differences in humans. So, please stop asking me "what's wrong" with me. 

- By Keith Hosey -

What People with Disabilities can learn fifty years after Dr. King’s "I Have a Dream" speech and the March on Washington

The march on Washington 50 years ago today, which included Dr. King’s “I Have a Dream” speech, was not just about racial justice, but also about economic equality. The March on Washington for Jobs and Freedom was not simply the battle for civil rights, its agenda was a broader and more radical one of economic equality. The brilliance of this march is that, in a time when African-Americans were regularly being beaten or killed or excluded from places just because of how they look, the organizers and Dr. King were looking forward -  looking towards economic justice as well as racial equality.

Without economic equality – jobs, equal wages, the same employment opportunities – no group of people can truly enjoy the American dream. So they organized the march, calling for “mass descent” upon Washington, with participants protesting “the economic subordination of the American Negro.” They envisioned a groundswell of protest calling for freedom and jobs with the dual goals of ending racial segregation and discrimination in the Jim Crow South and achieving economic equality for all Americans.

People with disabilities can learn a lot from the march and Dr. King’s speech. Namely, that until people with disabilities have economic justice and equality, we will not be treated as equals in this society.

Although people with disabilities are still being refused basic access and services – and we're still fighting for ramps and interpreters – our unemployment rate is also almost twice that of non-disabled. The true unemployment – those not working and not looking for work – is even higher. Many with disabilities that are working, are often working lower wage jobs and some are even paid less than minimum wage, thanks to outdated 1930s laws based on false assumptions that people with disabilities cannot be as productive non-disabled.

To make matters worse, many of the social support systems which are supposed to help uplift individuals who need a temporary “hand-up’ to achieve the American Dream end up holding people with disabilities in poverty. The fear of losing life-saving medical care has stopped many people with disabilities from working or becoming economically self-sufficient. As Sen. Edward Kennedy wrote, "the high unemployment rate among people receiving federal disability benefits is not because their federal benefits programs have 'front doors that are too big - i.e., have eligibility criteria that are too loose - but because they have 'back doors that are too small' - i.e., once persons are on the rolls, it is too risky to come off."

Fortunately, now more than ever, people with disabilities will be able to become economically independent. New rules for federal contractors to hire people with disabilities and an ever increasing desire of many companies to hire people with disabilities in general are breaking down stereotypes and inequalities in the workplace. Provisions in the newAffordable Care Act (ACA), including the end to discrimination over pre-existing conditions, new affordable health benefits exchange and expanded Medicaid will allow people with disabilities to find medical coverage outside of the limited current options. There’s never been a better time for people with disabilities to pursue employment and not fear for their health coverage.

Yes, ramps and interpreters and access and an end to discrimination are extremely important to the disability rights movement. But we shouldn’t forget what the March on Washington for Jobs and Freedom has to teach us. As long as people with disabilities are largely living in poverty, the public vision of us as ‘objects of charity’ will prevail and our demands for civil rights as a political minority will be ignored.

- By Keith Hosey -

Has the disability rights movement stagnated?

- By Stephanie Hickey -

I wrote an earlier blog about how the word “retard” is offensive and shouldn't be used casually, as if it doesn't hurt, and as if there aren't a million other word choices available to people. I am not the only one that has written or spoken out against the "r-word". There is a big national movement to educate people about the "r-word" and how harmful it is, urging others not to use it. And it has brought down a storm. Reading message boards, I saw the people getting up in arms, rallying, "I'll talk however the (you can fill in the blank on your own, I'm sure.) I want!"  "I'm so sick of these whiny (you can fill in the blank again) trying to tell me how to talk. We have freedom of speech in this country."

Freedom of speech is an illusion in this country. Or I should say that it is a misinterpreted notion. Yes, we do not live in a dictatorship where will get imprisoned or shot if we speak out and say the truth or what is in our hearts. But there is no such thing as consequence-less speech and I think many people forget this and misunderstand the idea of "freedom of speech." There are reactions to what we say. Our words can offended others. And our words can wound others--and wound them deeply.

But that does not mean we should be afraid to speak out when it is necessary and right, because our words can have a positive effect--and a powerful impact. I don't know if the disability community is really putting the power of words to full effect. I feel that we have some dirty words in our vocabulary. "Please." "Thank you." "I'm sorry." We are always apologizing. (as if we are an inconvenience). And saying "please" and "thank you" aren't always bad things. It is good manners to say those words. But we speak them as if we are obligated to thank everyone for every little thing that someone does for us. And believe me, I am not being preachy here, I am very guilty of this habit myself. I am always saying I am sorry, and I am always apologizing for asking for things to which I am rightfully entitled. And we are not being whiny whatever-people-want-to-call-us simply by speaking up for the basic things we deserve, such as respect and dignity and independence.

We are a legitimate community and minority. But I feel that we are not taking the steps that other minorities have taken in the past to make positive changes for themselves. We are not using our voices in government as strongly as we should--and we are not communicating with each other. April is National Disability History Month, and it's been more than twenty years since the ADA has been passed. But I feel that the disability rights movement has stagnated. We need to not be afraid to use our voices. Yes, there will be consequences and reactions to what we say--people may not like what we've got to say. But we are free to speak out and say what we think - so we must speak out and let our words make an impact.

Image of the ADA signing ceremony at the White House.

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.

Bullying the Disability Community

- By Rene Thompson - 

I'm sure that in recent weeks you have seen somewhere, on the Internet, on the TV some pundit claiming that people with disabilities are merely scamming the system, "takers" who CHOOSE to live on SSDI, as though living below the poverty level with severely limited resource and the fear of homelessness is something everyone would look forward to.

Keep in mind, these are the same people who blamed the long term unemployed as though they liked being without a job for months, years at a time.

These pundits are looking for scape-goats and we happen to be the latest target.  They are hoping that people will take the bait and not pay attention to companies out-sourcing jobs, or getting corporate welfare while giving their executives massive bonuses or legislators who claimed they would work on bringing back jobs who instead futz around doing anything but work on jobs.

But we don't have to accept the role of scape-goat.  We don't have to sit mutely while they claim that we are lazy, shiftless and criminal.  We can and should speak out against these media pundits when they denigrate and slander the disability community.  The disability community makes up 19% of the US population.  That's enough to have an effect on the media, businesses and politics.

Those who attack the disability community do so because they assume we will not or cannot stand up for ourselves. I suggest we prove them wrong.

TIPS FOR JOB SEEKERS

By Barbara Louise Davis

    To prepare consumers for the upcoming Louisville Career Fair on March 20, 2013, CAL is providing a Job Readiness Class on resumes March 7 from 10:00-11 a.m. at the Louisville Free Public Library (main branch). On March 13 CAL will host a Job Fair Boot Camp (at CAL) from 1-4 p.m.  Boot Camp will cover knowing your rights, online job applications, what employers are looking for, and other job search issues.

    Job seekers have a lot of questions and sometimes make mistakes as a result of not knowing the answers. The following list of dos and don’ts provide a guide. Attending CAL’s Job Readiness Class and Job Fair Boot Camp will ensure applicants have the information and assistance needed in following these guidelines.

DO:

Take Job Fairs Seriously

HR managers have ways of keeping track of professionally dressed attendees at job fairs. Additionally, people sometimes get interviewed on the spot and hired. This does not happen to those who arrive inappropriately dressed or with kids in tow.

Believe in Yourself

 If you are not absolutely sure you are the best candidate for the job, it will show.  Before heading out to sell yourself to a potential employer, sell yourself to YOU.

Put Your Best Self Forward in Your Resume

 Show what you accomplished and how you met your employer’s needs rather than simply listing job titles and duties.  Use action words and qualifiers to do this.  For example: “Promoted customer retention by serving food with enthusiasm and friendliness” instead of “Waited on customers in restaurant.”

Stay Prepared

Keep interview outfits and accessories clean and tear-free. Have money on hand for gas or transportation expenses. Plan your departure time in advance in order to leave early enough to accommodate any possible delays. Keep your resume polished and up-to-date. If you need assistance with any aspect of the job search, including professional interview clothing, call 211 for information on organizations that can help.

Be Ready for the Interview

Practice your interviewing skills with a friend or a professional during a mock interview. Research the company prior to sending out the application, and be ready with a list of good questions to ask the interviewer. Just before the interview relax and present an appearance of poise and self-confidence. If you practice this often enough, you will be able to get through an interview without nervous gestures or “freezing” at difficult questions.

Know Your Rights

Research disability rights on the internet and at the library. Attend free workshops on all aspects of job seeking - including disability rights - offered at CAL and other agencies. Knowing your rights can ease fears about asking for accommodations and prepare applicants for handling any “illegal” questions that might come up.

Follow Up After the Application and Interview

Show an interest in the position with a follow-up phone call after the application is submitted. If an interview is granted, send a thank-you note immediately afterward.

DON’T:

Sabotage Yourself

Prevent this by submitting your application in a timely manner. Stay abreast of technology that is used in job searches. Check your resume, application and cover letter thoroughly for errors and wording. When filling out applications or attending job fairs, be appropriately dressed. Arrive at the interview on time - professionally dressed and confident.

Leave Out the Cover Letter

The cover letter lets the hiring personnel know which position you are applying for and briefly explains why you are the best candidate for the job. It also provides contact information and asks for an interview. Employers will often trash a resume without reading it if a cover letter is not attached.

Having a Baby with a Disability

If you’re not Family or know us personally, you may not have heard: my wife, Shannon, is pregnant! Yes, I’ll be a father for the first time later this year and we're both really excited.

At one time in my life, I was worried about having a child with a disability. My congenital disability is hereditary and, for a long time in my younger years, I worried about passing that gene along. I obsessed about it, really. Now, I understand that it's a pretty correctable condition thanks to our most modern medicine. But at one point, I worried that my child might have to go through childhood being picked last for sports or possibly teased by other children for being different. Ironically, all the things that I now attribute to building character in my own life.

The day after I had found out that I was having a baby, I was at an event where a speaker was talking about her child with a disability. I listened to her experiences and had an epiphany. It was like a weight lifted from my shoulders. Unlike many people, I’m not worried IF my baby has a disability. Of all my encounters with people with disabilities, I am not worried that a child with a disability couldn't live a full, happy life. I know he or she could and would. It should be no surprise that I’m not ashamed of my congenital disability (but I will correct you if you call it a “birth defect”). In fact, I take pride in being part of the disability community.

If we had a kid with a disability, they would be lucky to get me and my wife as parents. Some of the greatest parents I've ever known have worked in the Independent Living Movement, too. As a result, we're less worried about our baby being "whole" or "healthy" and more focused on providing a meaningful life for our child, disability or not.

No, I’m not worried IF my baby has a disability. Instead, I’m worried FOR my baby if it has a disability. I'm scared for my child's feelings being hurt because of the perception of others. I worry about how society currently views and treats people with disabilities. I am scared to death that he or she won’t have true equality or equal opportunity in our society. If it's a severe disability, I worry about lack of community based services, that to get the services we need, we would have to lock our child up in an institution. I worry about a staggering unemployment rate.

I have no problem if my kid has a disability. If she or he happens to end up with a disability, then the work I've been doing for the last ten years for disability equality and accessibility just becomes that much more real to me. And if you're inaccessible for whatever reason, watch out. Actually, either way, watch out. Because for everyone's child who could have been mine, I'm working even harder now for equal access. 

- Keith Hosey

Equality is Never Trivial or a Waste

This week, the Senate debates the U.N. Treaty, The Convention on the Rights of Persons with Disabilities (CRPD). It's not only a proclamation that people with disabilities across the globe deserve equality, but is also a vehicle to hopefully ensure that other Countries give equal rights to people with disabilities. It was modeled after the U.S.'s own Americans With Disabilities Act (ADA), an international model for disability rights.

A small minority of Senators are holding back U.S. ratification, claiming that it would take away U.S. sovereignty and parents rights in America. But most experts agree it wouldn't affect U.S. sovereignty and the vast majority of disability advocates champion it, here and internationally.

In fact, over 100 other countries have already ratified it.  CRPD doesn't require anything of the U.S. above and beyond what the ADA already does. Former White House Counsel C. Boyden Gray and former Attorney General Dick Thornburgh, a parent of a child with a disability, have confirmed that no changes in U.S. law will be required to comply with the treaty.

So why is it so important that we ratify it? Ratification will allow the U.S. to "contribute formally its leadership and expertise on disability issues to rest of the world.” It is a powerful symbol that the U.S. values equality and human rights.

As I type this, the Senate will vote on CRPD. Many people have mentioned that while the "fiscal cliff" of sequestration looms, this is a waste of valuable legislative time. I would argue that equality is never a waste of time or resources. This, in fact, is why I believe the United States is the greatest country in the world. What if in the late 80s and early 90s, we said, "the ADA isn't as important as the national debt, let's put it aside for now." And the Civil Rights movement? Women's Suffrage?

I hope that the Senate does the right thing and votes to ratify international disability rights so that they can move on to other (but not more) important pressing matters.

Keith Hosey
Associate Director
Center for Accessible Living

Update: CRPD did not get the 2/3 votes in the Senate to be ratified by the United States of America.