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

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 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.

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.

Ten Ways To Advocate For Change

- By Barbara Davis -

In today’s economy it is likely that many of us are feeling frustrated over budget cuts, lack of jobs and reduction in services. We may feel that our politicians are letting us down in the laws they enact or don’t. It is easy to become complacent and think there is nothing we can do. Fortunately, this is not true. Below are ten ways we can advocate for change on both the local and federal level.
 
Vote.
Presidential, state and local elections are equal in importance. The mayor, city council members, state legislators and other officials write or enforce laws that impact our daily lives, while the President and Congress work on similar issues on the federal level.

Join support groups, councils and coalitions.
Some groups provide advocacy and support. Councils and coalitions offer opportunities to advocate for improvements in transportation, housing, education, etc. If you do not know of any specific groups, councils or coalitions in your area that advocate for your particular interest, search the internet for this information.

Call or write your legislators.
Legislators know who can hire and fire them, and they pay attention to these voices. If there is an issue important to you, let your legislator know. Participate in calling and writing campaigns when asked to do so. Better yet, visit them when they’re in their local office if you can.

Don’t take “no” for an answer.
Find out who else you can talk to or what appeal process is in place, and proceed accordingly.

Don’t assume a problem can’t be fixed, or a law can’t be changed.
If you want sidewalks in your neighborhood, find out where to start and go from there. It may take time and require a variety of methods, but if it is important to you, there are likely others who feel the same way. Start writing or calling campaigns, get a petition going, or join a council that is already working on the issue. If you gather enough support, the sidewalks will come.

Attend rallies and public meetings. 
Officials of schools, transportation and other service providers pay attention at packed public meetings. If you want more services, increased funding or improved neighborhoods, go to these meetings and have your say. Large rallies can have the same affect. When legislators realize a large number of their constituents have certain views, they take notice, and vote on impending legislation accordingly.

Participate in surveys, focus groups and questionnaires.
Companies who produce technology and provide services want our input. Changes in healthcare, transportation, assistive technology and education have all come about due to surveys and focus group participation.

Google it.
Google can tell you where to write your legislators, how to start a support group, and who to talk to about the neighborhood sidewalks.

Go public with your issue.
Utilize social media to post videos or voice an opinion. Write articles online, address a letter to the editor of your local newspaper, start a petition on Change.org, or contact your local TV station with a story idea.

Photo Credit: Flickr

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?

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