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.

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.

Know No Excuses

- By Guest Blogger Pinalben “Pinky” Patel -

I believe everyone should have a college education especially people using a wheelchair. Many people cannot go to college because of various responsibilities such as having to take care of a sick loved one or sports training, but having a physical disability is not a valid excuse.

However, there are different stages of disability. Some people in wheelchairs can drive, cook, clean, stand up or even walk a few steps by holding onto the wall. Whereas, some wheelchair users have very limited use of their arms and cannot stand or turn in bed without another person's help.

Hence, wheelchair users have to choose their study in college according to their capabilities. It certainly does not mean that the choices are limited. It just means that people using a wheelchair have to be realistic when it comes to choosing study areas.

For instance, I am a wheelchair user due to Friedreich's Ataxia. My FA has also made my upper body so uncoordinated that I cannot write with a pencil. Therefore, I don't think I can study surgery and become a surgeon even if I wanted to become one. I chose an area, which I could study as independently as possible.

Since my junior year in high school, I enjoyed writing. I wanted to study creative writing in college. I do not type as slow as I write with a pen but much slower than average. So vocational rehabilitation bought a voice-activated software called Dragon NaturallySpeaking for me to type my assignments faster. I enrolled in West Kentucky Community and Technical College because it was in town where I can use the local taxi. It offered an associate degree in English with many literature and creative writing classes.

When I finished the associate degree, I wanted to do a bachelor's degree. I went to Murray State University to do that because it was closest to my home. But it was still about an hour away from my home. I took journalism classes at that college because they were less demanding in attendance than creative writing. However, transportation and attendant care was still becoming an issue. Even though the University provided note takers and scribes for tests in classes, I had a difficult time finding reliable people to work with as I need help in the rest room and driving.

To resolve the frustrating problem, I changed my major and degree program to one that would let me take most classes online. I had Internet access and VR helped me get a computer so I was able to stay home while finishing my degree. I finally graduated with a bachelor's of independent studies in Print Communications.
People with disabilities should not worry about college expenses either – they are more than bearable. My college fees were paid by FAFSA and VR. Because I also had a KEES scholarship, I received a few leftover bucks from the financial aid office. When I had the hour commute, VR even paid for gas mileage and outfitted the family van with a wheelchair lift. I did spend a little money to take summer classes because I wanted to finish my degree faster, but that is not a requirement.

Although the cost of a college education does depend on the chosen school, a will to study would make any school a great choice. I did not want to study at any of the schools I had gone to, but in my situation those schools were the best for me. I wanted to focus on studying, not training personal-care attendants to handle my needs. Besides, I had lots of trouble finding daytime aides so I can only imagine the tediousness of my living in a dorm. After taking some classes, I found that there is no difference between an IV league and a public or community college. Education is education, no matter where it is from.

Education is really important to me because I was not expected to study beyond high school. People still awe at me when they find out I am a college graduate and strangely, that is a nice feeling. I want everyone in my situation to feel that sense of accomplishment.

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

Becoming An Effective Advocate

[Uncle Sam image]

- By David Allgood - 

Being a citizen advocate is really an easy thing to do; but being easy does not make it less important. I cannot stress enough what an impact your letters, emails and phone calls make to our elective officials. These actions have already made a huge difference in restoring funds for the aging and disabled populations in Kentucky. If the current legislation at the time of this printing passes the State Senate, then we will have restored $10 million over the next two years.

I encourage you, your family members and your friends to register to vote, if you are not already registered, and make sure that you actually vote on election day. Legislators pay attention to individuals who actually vote and have the ability to hire or fire them through their votes.

Get to know your local, state and federal representatives. Hopefully you can set up a meeting in person when they are at home in their district. Let them know who you are, and what issues are important to you. They work for you and they actually look forward to gaining a base of knowledge that they may not have had before your interaction with them. Make yourself the go-to person when they are dealing with issues that are relevant to individuals in the disability community. You may not have the money that the big lobbyists have, but you do have the power of the ballot, and this could determine whether the elected officials keep their jobs or lose it.

So get yourself, your family and friends involved in this process because a large number of involved individuals can truly make a difference.

The 2012 KY primary election is May 22. You must be a registered voter by April 23 to participate. CAL has voter registration cards which you can come by and fill out if you need to register. For more information visit http://elect.ky.gov/.

Letter to the Editor

Dear Editor:

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

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

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

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

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

Sincerely,

Marsha Hockensmith

Executive Director

Protection & Advocacy

100 Fair Oaks Ln, 3rd Floor

Frankfort, KY 40601

Norb Ryan

Kentucky ADA Coordinator

KY Office of the Americans with Disabilities Act

500 Mero Street, 2nd Floor

Frankfort, KY 40601

Mentoring Day is all about “You Can”

By Keith Hosey

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

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

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

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

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

Photo Credit Keith Hosey

Reflections On The Long Road We Have Come

- By Barbara Davis -

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

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

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

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

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

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

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

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

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

CAL Turns 30 - Thank you for your support!

- By Keith Hosey -

You may not have noticed. There wasn’t any fanfare, no celebrations or pats on the back. The Center for Accessible Living turned 30 in January. Founded January 19, 1981, the Center began as a housing resource for people with disabilities, the first of its kind in Kentucky. The Center started as a dream of a few people with disabilities asking the question: What do we really need to live our lives?

I am so very proud to be a part of this thirty year tradition. The Center for Accessible Living has helped tens of thousand of people with disabilities live independently since 1981. TENS OF THOUSANDS of people have had their lives changed for the better because the Center was here. People like Jackie, Arthur, Cass, Georgia, Bruce, Theresa, Jake, Elijah, Myrna, Violet, Greg, Tony, Ian, Bobby, Alan, Eric, me… and so many more.

The Center has been instrumental in systems change. CAL was involved in helping to implement the Medicaid Buy-in, a ramps program, the Kentucky Personal Care Attendant Program pilot, then PCAP expansion money - allocated for an actual statewide attendant program, Consumer Directed Option, Money Follows the Person, accessible parking fines to go towards PCAP funds, accessibility across the state, legislation to get ASL interpreters certified to ensure quality of communication, increasing accessible affordable housing options, restoring services to 3,500+ people in nursing homes and Community Based Services (through ARMS), the Real Choice Program – which directly transitioned 19 people out of institutions.

There was no fanfare. There were no big galas. My co-workers were busy in January. Busy helping Violet understand her bills, helping Bruce move into his own home, telling SSA beneficiaries they can work and be successful, managing attendant care, providing freedom in ramps, IL skills, employment, suits and advocating for legislation that helps every Kentuckian with a disability.

In January one man got a job and can provide for his son, nine people received ramps or home modifications, 170+ people received PCAP services that kept them in their own homes. All and all, it was a pretty routine January. What we call routine, our consumers call access and freedom and quality of life. That is why I am so very proud to be a part of this thirty year tradition.

The R-Word

- By guest blogger Stephanie Hickey -

I love words. But there is one word which I hate very particularly. Retarded. I hate that word and not only do I hear it constantly, I hear it everywhere: on television, on the streets, while riding the bus, everywhere.

“That’s so retarded!” It is a phrase that permeates our culture. Even more common to hear is the phrase “God, you’re so retarded!” The definition of the word means 1.) To delay or hold back in development or progress or 2.) A person who has a mental disability. In parenthesis, the definition specified the word retard was an offensive term or abusive.

Now although most people today don’t say “retarded” in reference to mentally or intellectually disabled individual (in fact, many--when asked--agree that to use the word in such a context is cruel and wrong, opting for the more politically correct and thoughtful terms such as “developmentally disabled” or “intellectually disabled”, the word is so still prevalent in everyday life. Its context is merely different. When a person currently says, “That’s so retarded”, he or she means stupid, lame or ridiculous. I’ve actually had people say to me, “You know I don’t mean it that way” or justify their use of the word when describing something as “Well, there’s really no other word to describe it (fill in some random example such as a blunder one would see on America’s Dumbest Criminals or America’s Funniest home videos). What else can a person say besides, “That’s so retarded!”?

No harm done, right? After all, it’s not meant that way. Well I contend that using the word retarded, referring to something as retarded and--especially jokingly calling others retarded, does cause harm, however unintentional. Damage is done because whether or not people mean people with mental disabilities when saying retarded, the word evokes images of people with intellectual disabilities because the two are linked to each other in our subconscious through previous years of usage and tasteless jokes that persist today. So each time someone utters the word it reinforces the cavalier attitude that it is okay to use the word, ignoring the fact that it is an offensive term that abuses people with developmental disabilities.

Suppose that a previously offensive racial slur took on a different meaning and began to be commonly used in everyday language. Can we really imagine that the minority against whom the term was a slur would forget its offensive history and tolerate its common use? Why should retarded be any different?

While I know that dreaded r-word is a permanent fixture in our culture of which we will never be rid, I would like to challenge the what-else-can-we-say attitude. If a person means retarded as in stupid, lame or ridiculous, why can’t that person say stupid, lame or ridiculous? How about thick, silly or absurd? Harebrained? Preposterous? Outlandish? Instead of using an offensive term meant in a “nice way”, why can’t we challenge ourselves to stretch our vocabularies? Perhaps if we do then the dreaded r-word may disappear from pop culture forever.

For more information, or to help “Spread the word to end the word”, please visit http://www.r-word.org/.

ADA 20th Anniversary: In Our Own Words

ADA, the beautiful!

- By Guest Blogger Pinalben "Pinky" Patel -

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

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

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

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

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

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

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

The ADA: 20 Years – My Hero

- By Keith Hosey -

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

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

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

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

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

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

Who inspires you?

I'm disabled - not someone to look straight through

- by Guest Blogger, Stephanie Hickey -

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

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

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

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

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

Photo Credit

What does the ADA mean to you?

The ADA: 20 Years

- By Keith Hosey -

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

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

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

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

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

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

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

Photo Credit

Should Hidden Disabilities Be On Your ID?

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

- by Barbara Davis -

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

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

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

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

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

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

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

Social Justice is Everybody’s Issue - Part 2

- by Keith Hosey -

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

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

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