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