Labels are for clothes

By Timothy Redd

Handicap, crippled, disabled, special needs, handicapable, differently-abled, and wheelchair bound are a few of the labels I have been defined by the course of my 37 years of life. One of my good friends called me handicapable and I let him. I’d appreciate if he did not. 

I’ve seen people call themselves handicapped, wheelchair bound, and even crippled.  All of this got me thinking how I would define myself. The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activities.

First let me say the terms cripple and handicap are extremely offensive. The word cripple refers to a person unable to walk through illness or disability, it’s derived from two Old English words crypel and crēopel and is recorded in Lindisfarne Gospels dating back to 950 AD Old English. 

The term handicapped is a term that rose and fell with the 20th century. It arrived on the scene in the late 1800s as a way to talk about a range of disadvantages — one could be economically, socially or even morally handicapped by circumstances. The term originated at the racetrack, where a horse that was stronger, faster, or otherwise superior in some way could be given a handicap (a weight, a longer distance, a later start) to equalize the chances of the competitors. Initially, parties to such matches concurred to the conditions of the handicap by placing their hands into a cap and either pulling out or leaving cash stakes they had placed there. This conception of “hand in cap” is where the word first emanated from. 

Handicap commenced to be applied to physical and mental differences in the early 1900's, when the fields of sociology and social work began visually examining people in terms of their place in society holistically. What had been visually perceived previously as individual failings or imperfections were recast as disadvantages with respect to larger contexts.
When I hear the term cripple I think about Tiny Tim in Charles Dicken’s, “A Christmas Carol,” a story for me that evokes pity. That is something I don’t need or want from people. 

When I hear handicapped, I think of the standard parking sign. The man depicted in the image is all rigid and appears glued to the chair that in no way reflects me. I remember, when I was in school, I was grouped in with the students from the special education class at lunch because I used a wheelchair, even though I took regular courses.

We live in a society where there is a label for everyone and everything. What I find most aggravating is that we often are not seen as people but rather our disability. It can be extremely difficult to feel comfortable with yourself when you have to fight against the idea that something is wrong with you. 

These days I feel I am fine because this is how I was born, and my disability is my norm. It has always been here.  When it comes to how I identify, I identify as Tim, that’s my name. Yes I can’t walk and it does limit me in some ways but it’s not the complete summation of my total being. I am a man, son, brother, uncle, friend, and so much more. I wish people would see me for my humanity and not label or see me as a diagnosis. Fighting against that is exhausting sometimes. Labels are for clothes and I’m fine without any.  How do you identify?

Arthritis management

Arthritis and tools you can use

By Timothy Redd

I attended a webinar that focused on reaching people with arthritis and offering strategies and tools for arthritis management. I learned quite a bit about arthritis. Did you know?

• About 1 in 4 (54 million) adults have arthritis.
• More than half of adults with arthritis (32 million) are of working aging (18-64 years).
• Nearly 60% of adults with arthritis are women
  

Arthritis means joint inflammation. About 1 in 4 (54 million) adults have arthritis. More than half of adults with arthritis (32 million) are of working age. Close to 60% of those with arthritis are working age and that arthritis is the leading cause of disability. The annual direct medical costs are at least 81 billion. 

The term arthritis refers to more than 100 diseases and conditions affecting the joints. The most common type of arthritis is osteoarthritis. Other forms of arthritis are gout, lupus, and rheumatoid arthritis.

Symptoms of arthritis are pain, aching, stiffness, and swelling in or around the joints. Rheumatoid arthritis and lupus, can affect multiple organs and cause widespread symptoms. Arthritis commonly occurs with other chronic diseases. About half of US adults with heart disease or diabetes and one-third of people who are obese also have arthritis. Having arthritis and other chronic conditions can reduce quality of life and make disease management harder.

Everyday activities such as holding a cup, lifting a grocery bag, or climbing a flight of cares can all be limited by this condition.

• One third of adults over age 45 with arthritis report anxiety or depression.
• About 3 in 10 find stooping, bending, or kneeling very difficult.
• More than 20% of adults with arthritis find it very difficult or cannot walk 3 blocks.

One of the best thing recommendations for leading a better quality of life with this condition is physical activity. Physical activity can reduce pain and improve physical function by about 40%. 

There are several arthritis management education programs that can be found on the arthritis foundation website. A great one is the walk with ease program, for this particular program there is a mobile app for iPhone and Android users that you can download or you can access the program online. 

A wealth of information and support tools can also be found at the following websites:

• https://www.arthritisintrospective.org/
• www.arthritis.org
  

If you would like to person to person support you can speak to by calling 1-844-571-HELP.
 

Mid-South ADAPT confronts Corker

Local ADAPT Chapter asks Senator to support for Disability Rights

Today Mid-South ADAPT confronted Tennessee Sen. Bob Corker asking him to cosponsor the Disability Integration Act (S. 910). Standing on a chair in the Crave Coffee Shop in Arlington Tennessee, a Mid-South ADAPT member caught the Senator at a rare public meeting and requested the Senator support people with disabilities civil right to live in the community.

“Elderly Americans and people with disabilities demand choice in long-term care,” said the activist standing above the crowd on a chair. “Tennessee more than most states needs the Disability Integration Act to avoid expensive institutions and nursing homes.”

Corker spoke briefly at the coffee shop outside of Memphis and answered some questions from the crowd that packed the small venue. The Senator stopped promptly at 9:AM. Mid-South ADAPT handed Disability Integration Act information to Senator Corker and he said that he would look at the information.

The Disability Integration Act (DIA) is civil rights legislation, introduced by Senator Schumer to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S. 910) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.

The legislation, when enacted, establishes new federal law - similar in structure to the ADA - that requires states and insurance providers that pay for LTSS to change their policies, provide community-based services first, and offer HCBS to people currently in institutions. DIA operates alongside CFC, but these two laws work very differently. CFC is an option which states can choose. Even though CFC provides money for states to support independent living, many states have not chosen CFC. DIA requires states and insurance providers that pay for LTSS to make real and meaningful changes that support the right of people with disabilities to live in freedom like every other American.

The proposed legislation establishes new federal law - structured like the ADA - that says “No public entity or LTSS insurance provider shall deny an individual with an LTSS disability who is eligible for institutional placement, or otherwise discriminate against that individual in the provision of, community-based long-term services and supports that enable the individual to live in the community and lead an independent life.”

DIA makes it illegal for a state and insurance providers that pay for LTSS to fail to provide HCBS by using waiting lists, screening people out, capping services, paying workers too little for services, or the other excuses that have been used to keep people with disabilities from living in freedom. DIA requires each state to offer community-based services and supports to any individual who is eligible to go into an institution. It also requires states to take active steps to make sure that there is enough affordable, accessible, integrated housing.

The legislation requires states and LTSS insurance providers to complete a self-evaluation to evaluate current services, policies, and practices that do not or may not meet the requirements of the Act and to make the necessary changes in services, policies, and practices required to comply with the law.   Additionally, public entities are required to develop a transition plan using an extensive public participation process. Public entities that fail to comply with the law may face legal action for the Attorney General or may be sued directly. People who have been discriminated against may receive damages under the law.

STAC April Report

By Allison Donald, STAC Chair
The Specialized Transportation Committee (STAC) met April 14, 2017 at the Trolley Barn, 1370 Levee Road. During March’s STAC committee meeting Ms. Houston put in her notes that she would speak with Mr. John Lancaster about the use of MATA traveler for MATAplus riders.  However, during April’s meeting no contact had been made.  STAC will continue to monitor and follow up and ask for a meeting by the next scheduled meeting for the STAC committee.

As a committee, STAC agreed that there needs to be a clear distinction of what curb to curb service means and how that affects the riders traveling experience.   Ms.  Houston did acknowledge the need for better communication for riders and bus drivers and responsibilities as to what they can and can’t do when transporting passengers. Ms. Houston said that she is working on a script that will be added to the telephone prompt that will inform riders of the duties of the driver. 

The last item on the agenda for April’s STAC meeting was the review and revision of the bylaws of the STAC committee.  No major changes were made as to the structure of STAC and its operating procedures.  However, there were some minor changes made to who will be recognized as a member of STAC versus who is recognized as a guest.  There was also some changes suggested for the absentee policy.
Every issue that was addressed in this report is ongoing and we strive as a STAC committee to work to advise MATA not fix MATA, because only they can do so and that is why we invite ALL MATAplus riders to be a part of the process.  Our next meeting will be May 5, 2017 at 2:00pm at the Trolley Barn.  The address is 1370 Levee Road.  If you would like more information contact Allison Donald at Allison@mcil.org or 901-726-6404

Disability Integration Act Introduced

Disability Integration Act (S. 910) Introduced, Kick-off event coming up soon

Senate Minority leader Sen. Chuck Schumer of New York has introduced the Disability Integration Act, Senate Bill 910 in this legislative session. Sen. Casey and Warren are original cosponsors of the bill that will have a more public kick-off sometime later this spring.

Twenty-five years after the signing of the Americans with Disabilities Act (ADA) of 1990, unwanted institutionalization remains a serious problem for people with disabilities and seniors. This issue was documented in the HELP Committee report: “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act”.

That report recommended that Congress amend the ADA to clarify and strengthen the law’s integration mandate in a manner that accelerates Olmstead implementation and clarifies that every individual who is eligible for LTSS under Medicaid has a federally protected right to a real choice in how they receive services and supports. The report and this recommendation were well received by the Disability Community.

Although the Disability Integration Act (S.2427) does NOT amend the ADA, the legislation, modeled on the ADA and the ADA Amendments Act, strengthens Olmstead’s integration mandate and creates federal civil rights law which addresses the civil rights issue that people with disabilities who are stuck in institutions cannot benefit from many of the rights established under the ADA.

Legislative Background
The Disability Integration Act builds on the 25 year campaign that ADAPT has done to end the institutional bias and provide seniors and people with disabilities an alternative to unwanted institutionalization. There have been a number of different incarnations of legislation intended to address Medicaid’s institutional bias, starting with the Medicaid Community Attendant Services Act.

Previous versions of legislation were required to do two things: create a Medicaid infrastructure that would meet the assistance needs of all individuals at the institutional level of care and mandate that states implement such a program. Consequently, previous versions of legislation were focused on Medicaid.

However, the Affordable Care Act included language that created the Community First Choice (CFC) Option. This language established a simple Medicaid State Plan option that pre-invests the savings associated with transition to home and community-based services into an incentive of an enhanced FMAP.



Current Environment
Although CFC was optional, it was believed that the six percent additional FMAP would result in states selecting the option and providing a real alternative to institutionalization. Unfortunately, only six states (California, Oregon, Maryland, Montana, New York and Texas) have implemented Community First Choice. Other states have indicated that they intend to implement CFC or have submitted a State Plan Amendment to CMS, but uptake of this option has been extremely limited. Some states – like Illinois – determined the state would actually generate excess long term revenue by implementing CFC, but still haven’t selected the option. It is possible for states to implement CFC, secure the extra federal funds, and continue to maintain policies that limit access to services or fail to provide a real alternative to institutionalization.

http://www.disabilityintegrationact.org/sen-chuck-schumer-on-disability-integration-act/

West Tennessee Fair Housing Celebration

MCIL joins other local and state agencies in our commitment to Fair Housing

By Tim Wheat
The Memphis Center for Independent Living had the stage after lunch at the Memphis Botanic garden for the annual Fair Housing Conference. This year MCIL sponsored the event with the Tennessee Human Rights Commission, The Memphis Area Legal Services, The City of Memphis and others.

Board member Louis Patrick was to speak at the event and was replaced at the last minute with the MCIL Program Director who challenged the crowd to find the Fair Housing issues in authentic photos of inaccessible apartments in the Memphis area. The event was attended by over sixty people and was offered as a training and celebration. 

The Keynote Speaker was Bryan Greene, the Acting Assistant Secretary for Fair Housing and Equal Opportunity for the U.S. Department of Housing and Urban Development. Mr. Greene was the 2007 recipient of the Presidential Rank Award, the highest federal honor bestowed upon federal senior executives for outstanding service.

“Fair housing is critical to other opportunities,” said Mr. Greene at the Memphis Botanic Garden. “HUD must effectively administer the law to make all communities open and attractive to everybody. Criminal background and eviction history creates a separate local market apart from HUD requirements. Many places do not rent to people with old convictions and arrest records. This can be a violation of the Fair Housing Act.”

Terri Freeman and Deidre Malone, headed the next segment facilitated by Kathy Trawick of the West Tennessee Legal Services. Ms. Freeman is the President of the National Civil Rights Museum and Ms. Malone is the new President of the Memphis Branch of the NAACP. 

The panel noted that gentrification does not always bring problems and noted that the Civil Rights Museum is actually an anchor for gentrification downtown. It is clear that redevelopment like Foote homes near the NCRM needs a grocery and that communities must be transformed before there is business investment. The moderator also presented the idea of visitibility to the group and how “town-homes” are used as a way to circumvent the accessibility of the Fair Housing Amendments Act. 

The Final Panel of the day had Tim Bolding, the Executive Director of United Housing and Steve Lockwood, Executive Director of the Frayser Community Development Corporation. They both mentioned MCIL and our importance for Fair Housing. Mr. Bolding said he builds accessible homes and was powerful in his demand for home buyer education. He said that information and education was what makes housing sustainable.

National Federation of the Blind of Tennessee Meets in Memphis

Next years convention is in Nashville

By Christina Clift

During the 2017 convention of the National Federation of the Blind of Tennessee 200 blind individuals gathered at the Crown Plaza Hotel in downtown Memphis to learn how to live the lives they want and that it is respectable to be blind.  

Some of the topics discussed over the three-day weekend included: exciting advances in technology, updates on legislation that will improve the educational opportunities for all blind students, how to stay fit and healthy, and updates from organizations such as Tennessee Vocational Rehabilitation, The Tennessee Library for the Blind, and the NFB national office. Convention attendees also had the opportunity to drop by the hospitality suite, explore the exhibit hall, and participate in several raffles.  

At exactly 9:00 AM on Saturday morning the gavel sounded which opened the 2017 convention of the National Federation of the Blind of Tennessee.  The welcoming ceremony highlighted the rich history that Memphis offers in the areas of music and basketball, as well as greetings from the Tennessee legislature by Senator Reginald Tate. 

Throughout the entire day the theme of “Federation Heart, Grit and Grind” was continued.  It not only reflected Memphis’s love for the Grizzlys, but also the spirit of our organization.  

Perhaps one of the most anticipated topics of the morning was the live demonstration of Aira.  This technology provides visual interpreting through the use of a device hooked onto a pair of glasses.  It can provide blind individuals with travel instructions to reach a destination, describe patterns on a rug, give menu suggestions at a local restaurant that you might like, recognize faces, and help you find an empty seat in a crowded room.  

You access a live Aira representative through an app downloaded to your phone and through a terminal she can see what you are looking at by asking you to scan your environment.  Although it is still in the testing phase, Aira created quite a stir in convention attendees.  Vocational Rehabilitation will be getting lots of requests as soon as it becomes available to the general public.  You can find more information about Aira by visiting their website at https://aira.io.  

OrCam also provides a device that hooks onto your glasses which will read print that it sees.  James Boehm said, “I can sit in the back of my class at Vanderbilt and Orcam will read what my professor has on the screen. It’s provided me with a way to instantly access things I would normally have to wait for someone to read or send by e-mail.”

NFB Tennessee closed the first day of general session out by electing three new individuals to our state board of directors.  They included Greg Self from Knoxville, Shannon Hanson from Knoxville, and Joh Harris from Murfreesboro.  These three individuals will be a great addition to the state board.

On the last day of convention reports were given from each Tennessee affiliate chapter and division.  It’s was an opportunity to get a peek at what other chapters were doing for outreach, community education projects, fundraising, and membership. After hearing the reports it’s safe to say that our chapters are strong, active, and growing throughout the year.  

It was a time to also reflect on the lives of the members who died and didn’t make it to convention.  The Federation is like a family and we miss those who are no longer with us, cheer on those who are in poor health, stand up for those who need help, and welcome new members with hope, love, and enthusiasm.  We also selected our location for next year’s convention which will be Nashville. We hope to see you there.