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/ 

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.

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

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

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

Ten Ways To Make Navigating The System Easier

By Barbara Davis

In today’s economy, more people without jobs are feeling the need to jump through a variety of hoops in order to get financial assistance, housing, food stamps and other services. This can be an overwhelming and frustrating process for anyone. For individuals with disabilities or the parents of young children with disabilities it can be a nightmare. The application process for disability benefits, health care, accessible housing, attendant care, housekeeping assistance, various therapies (speech, occupational, physical and counseling) and other services can be extremely daunting. Add the hassle of getting accommodations for appointments into the mix and well, it’s not a pretty picture.

With a little creativity and some planning, there are ways to make this process easier.

Get a loose-leaf binder and fix it up so that you can put everything you need in one place

Create pockets to hold envelopes and stamps to be used for mailing completed forms. Use sheet protectors for documents such as birth certificates, shot records, school records and others. Keep a calendar for tracking appointments and an address book (with phone numbers and addresses of schools, service providers, etc.) in the binder also. Include a notebook in your binder for writing questions you may have or information you need to remember. If you have more than one child, or you are receiving multiple services, keep several of these binders on hand.

Rely on 211 if it is available

If you are a “systems navigator veteran” you may think you are fully versed on programs, services and resources in your area. However, new services are often added and old ones are sometimes dropped when funding ends. Newbies to the system may not have a clue where to start. Using 211 can be a lifesaver for both “veterans” to the system and newbies.

Join Support Groups

Long-term members of support groups have become experts at navigating the system and finding resources for themselves or their families. They can help newbies and each other find appropriate health care providers, support services, recreational activities and resources. If you are a parent of a child with disabilities, joining a support group specific to your child’s disability can provide information and support to help with schools, healthcare, locating adequate daycare, and many other issues. Adults often find such support groups to be beneficial socially as well, which can be a great stress-reliever in these difficult times.

If possible, set aside the same day each week for appointments

It will be much easier to make, remember and keep appointments if all of your appointments are on the same day of each week, or the same several days, if necessary. For example, if your parent/teacher conferences usually get scheduled on Fridays, try to schedule all appointments on Fridays. If you have to take your kids for their allergy shots on Monday, Wednesday and Friday afternoons, try to schedule other appointments for earlier on one of those days. Obviously it may not be possible to always schedule appointments this way, but the more often you can do it, the easier it makes it for you.

If there is an overwhelming amount of paperwork to be completed at the same time for different service providers, work a little bit on each form, every day, until it all gets done

Most paperwork will be redundant. Nearly all of them will want your social security number, birthdates, physicians’ names and addresses, your name, address, and phone number, and the same information for other members of the family. If you allot yourself a certain amount of time each day, you can easily select sections of each form to complete. On the first day you can complete the sections requiring information you can retrieve from memory. During the ensuing days, you can pick sections requiring you to look up information, such as previous hospital stays. Work in this way until you get all the forms completed and in the mail.

Keep copies of all completed forms

If you have to look up your bank account number, your doctor’s address and phone number, or any other piece of information in order to complete a form, keep a copy of the form in your systems binder. By doing this, you will save yourself from having to look up the information again for another service application. If you are lacking in organizational skills, ask a family member, friend or caseworker who is organized to keep copies for you.

Be a packrat for awhile

You never know when a service provider is going to want your child’s shot records from five years ago, or your income tax papers from three years before. It pays to keep any of these types of documents on hand for at least five years or longer. In some cases, such as with school transcripts, you may want to keep the documents permanently.

Be cautious with your systems binder

Whether you keep a systems binder or not, chances are you will be carrying documents with sensitive information from place to place. Keep in mind that most of these forms and documents will contain your social security number and birth date. Keep these documents in your sight at all times when you are away from home. In the home, keep them in a safe place, preferably one with a lock on it.

Let Google be your friend

The internet is an excellent source for looking up directions, addresses, phone numbers and websites for service providers. In many cases, forms, documents and applications can be printed off of these websites. If you MapQuest any directions to a service provider, print them out to keep in your systems binder for future reference. You will also want to print out the instructions and regulations found on the website for the service you are applying for, and store these in your binder.

Delegate some of the load to others

If you are truly overwhelmed, ask a friend, family member or case manager to help you. Case managers and social workers have been instrumental in helping me to complete a mountain of forms. My grandmother kept my sons occupied while I completed forms, and friends provided sound advice on what to write on the forms. In my experience, everyone was more than happy to help. By accepting this help with gratitude, I was able to get through the process much more smoothly than I would have on my own.

Bad Access Flickr group

Have pictures of bad accessibility? Want to show the world? Share photos and info about poor accessibility in your community. The Americans with Disabilities Act (ADA) has been around for almost twenty years, but many places still have bad access. If we can't laugh about it, we might cry... share your photos and frustrations about ridiculous access. Check out the Flickr bad access group.