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

What We Need from Our Allies

Allies

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

What We Need from Our Allies

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

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

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

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

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

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

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

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

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

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

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

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

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

Liberation 

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

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

"Handicapped" Does not Define Me

- By Carrissa Johnson - 

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

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

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

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

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

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

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

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.

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

Why Don’t We Use ‘Disability’ and ‘Pride’ together more often?

- By Keith Hosey -

Why don’t we talk more about disability pride? I believe that disability is natural and that people with disabilities can do anything non-disabled people can do, we just do things a little differently sometimes. I understand that not everybody feels like I do about their own disability, but consider this: Eleanor Roosevelt once said “No one can make you feel inferior without your consent.” If we can’t be proud of who we are, how can we ever expect society to treat us as equal?

We need more pride in the disability community. We need to celebrate our heritage and our abilities. Other minority groups celebrate their proud heritage, so why not us too? This community has athletes, comedians, professionals, actors, CEOs, etc. People with disabilities have climbed Mt. Everest won Ms. America and even became President. We have quad rugby, paralympians and the third most used language in America (ASL). We are the largest political minority and, as consumers, we have huge spending power.

Even though Club Foot is one of the most common congenital disabilities in the world, I only knew of one person who was like me when I was growing up, a female figure skater. I could identify with her because we shared the condition of club feet. Only one person who I could say, “hey, she’s like me, I can be successful too.”

We need to recognize and celebrate those people who are role models with a disability. We have Marlee Matlin, Ray Charles, Penelope Trunk, Muhammed Ali, James Durbin and Mark Zupan. We have Leroy Colombo, a Deaf man known as the “world’s greatest lifeguard,” who saved more than 900 lives. We need more role models – and not just the famous ones, but neighbors and friends - to be proud of their abilities and of this community so that kids can say, “hey, he/she’s like me, I can be successful too.”

Are you a person with a disability? We need YOU. Celebrate your disability pride.

Why I Care about New York’s Marriage Equality Act (And So Should You)

- By Keith Hosey -

On Sunday July 24th New York joined the elite few states that recognize GLBT people as human beings and full citizens by legalizing and legitimizing same-sex marriage (while my state went as far as passing a law banning same-sex marriage a couple years ago). Congratulations to the GLBT community for this win, it’s fantastic and I’m happy for all the couples that have gotten married so far.

But I’m straight and a disability rights activist, why should I care about GLBT rights (other than the fact that I have numerous friends who happen to be gay)? Maybe it’s because of the way I was raised, to value people as people. I carry a picture of Dr. Martin Luther King, Jr. in my wallet with the quote “Injustice anywhere is a threat to justice everywhere”. I believe in civil rights and equality for all people. I can’t talk about disability rights without acknowledging the rights of everyone.

Someone once told me that I only care about disability rights because I work for the Center. That makes me smile and laugh. Sometimes I wish it was a nine-to-five belief. I believe that every person, no matter their background, genetic markers, birthrights, origins, etc. deserves to have the respect of being treated as a human being. I don’t understand discrimination, possibly because I’ve personally experienced it. I don’t think that anyone should have to endure discrimination in a free society, that we should all be afforded due respect as people.

I don’t understand people who can fight so fervently for their personal social justice cause and not care about the other groups. I’ve known people who steam at the use of the word “fag” then ask me why it matters if they use “retard”... It’s just a word after all, they say. I believe that we’re all tied together in this fight for equality. How an African-American is treated in a business has an effect on the disability or GLBT community -- and vice versa. The “glass ceiling” in women’s pay equality is as frustrating to me as an inaccessible business. Are my civil rights any less important than yours? Are yours less than mine? I personally don’t think anyone else’s value is less important than mine. Because we’re all only people after all… and isn’t that what civil rights are all about?

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.