Freedom from Fear Part 1

By Sheila Patrick

I will be the gladest thing under the sun.
I will touch a hundred flowers and not pick one.

I will look at cliffs and clouds with quiet eyes
Watch the wind bow down the grass
and the grass rise

And when the lights begin to show
up from the town
I will mark which must be mine
And then start down 
Edna St, Vincent Millay
Afternoon on a Hill

I am here to tell a story about my late husband, Louis Patrick, and about a political movement and organization that was very important to him and has become very important to me as well.
 

In 1950, when he was three years old, Louis contracted polio, also called infantile paralysis. In the first half of the twentieth century there were a number of epidemic waves of this disease. The worst and final wave of American cases was in 1952, two years after Louis contracted polio. 
 
Because the Salk and Sabin vaccines then immunized most American children and almost eliminated polio from the world, the numbers of survivors of polio are dwindling today, but while they were still a large population, many of that group led the disability rights movement in the sixties and later the independent living movement that caught fire in the eighties. 

Other people with disabilities also led in these developments, especially veterans of the Second World War, but the polio group was certainly a significant factor.  As I got to know Louis in the sixties, I noticed that many survivors of polio viewed obstacles to their mobility as solvable puzzles, rather than insuperable limitations. 
 
I like to think that part of the reason for this attitude was the example set by a very great man who contracted polio as an adult, a man my husband and I both admired very much even though he died before we were born. That man, of course, was Franklin Delano Roosevelt, the only president elected four times, and by whose achievements all subsequent presidents have been measured, and, in my view, found wanting, including great expectations for a new president’s first hundred days.
 

After FDR died, a Constitutional Amendment prevented anyone else from being elected more than twice, although it is unlikely that many of FDR’s successors could have achieved such a thing anyway, any more than they have met the standard of the Hundred Days.
 
FDR had been to the manor born and led a charmed life, with a promising political career, until 1921 when he became ill after visiting a Boy Scout camp. He never regained the use of his legs and might have spent the rest of his life as a secluded invalid except for his wife Eleanor, who supported, and may have even insisted on his return to politics.
 
To regain his strength as well as his morale, Franklin bought and refurbished a dilapidated resort in Warm Springs, Georgia and turned it into the first major institution for the treatment of infantile paralysis. I think the fact that most of the other residents at Warm Springs were children had a lot to do with FDR regaining his customary buoyant good spirits. At Warm Springs, FDR learned all he could about polio, developing new forms of treatment, a new design for crutches, and a system of hand controls that made it possible for him to enjoy driving his own car.
 
In 1928, just before the Great Depression threw the whole nation into shock, he officially re-entered political life, ran successfully for the office of governor of New York and then, in 1932, was elected for the first time as president. His first two administrations were consumed with addressing the Great Depression and the remainder of his presidency was spent in the effort to defeat fascism and forge a new international world order.
 
Both of these challenges were massive. Earlier presidents had despaired of the possibility of reversing economic catastrophe or breaking the pattern of stumbling from debacle to debacle in a world with appallingly and increasingly destructive military technology. FDR, however, sought experimental approaches to these intractable problems and was more successful than anyone thought possible.
 

At his inauguration, FDR told the nation that the main obstacle to recovery from the depression was fear itself, the panic and despair that made most people afraid to spend money or hire people or start businesses. In 1941, just before the US became officially involved in the war against fascism, FDR gave a speech that listed Four Freedoms as the essence of a civilized world, ideals he believed that even the most isolationist, America First citizens would consider worth fighting for: Freedom of Speech and Religion and Freedom from Want and Fear.
 
The first two of the Four Freedoms were already embraced with pride by most Americans. Freedom from Want or destitution was less traditional, since Americans had always thought that poverty was a personal fault. The Depression taught a lot of Americans, at least temporarily, that it was irrational to blame the poor for poverty, that it could strike anyone, and that economic security might be a civil right.
 
Freedom from Fear, however was something new for Americans to embrace. In that speech, FDR seems to have been referring, primarily, to bringing an end to international military aggression, but he  also knew that the spread of fascism had brought with it the brute politics of exterminating hatred, a fanatical program to rid the world of all people who did not fit the fascist ideal of normal. He also knew well that, for people with disabilities, the first obstacle to living fully was fear in all its manifestations, one’s own fear of risk and the fear that other people felt toward people with disabilities.
 
For generations, families had often kept relatives with disabilities secret or at least out of sight, as a genealogical defect, a source of social stigma. People who did not have disabilities also expected to be spared the sight of those who did, and this irrational dread of seeing or being seen was among the most serious barriers to full participation of people with disabilities in their own communities.
 
I think it can be safely said that no one is more visible than a president of the United States. The privileged life that FDR had led gave him a powerful self-confidence, but even he went through a period of mourning for his old self when he first loss the use of his legs. 
 
Even though he refrained from drawing undue attention to his disability, most people, especially in Congress and the press, were well aware of FDR’s condition. Certainly, with such an example, it would be really difficult for polio survivors to see themselves as helpless. When Washington D.C. finally got around to creating an FDR memorial, disability rights advocates protested that none of the sculptures showed him in a wheel chair, which would help dispel the stigma of disability.
 

I met and married Louis in 1968, a year of terrible shocks that included assassinations as well as escalation of both the war in Vietnam and the opposition to it. For us, though, it was a time of great exhilaration for the explosion of creativity around us and, more importantly, for the daring and righteousness of the modern Civil Rights movement, the people who risked their lives to overcome segregation and racism and those political leaders who worked with them to make the country more just and democratic, even in the face of fierce and often violent resistance to these changes.
 
Louis and I were very happy, playing and taking turns going to work and school. One evening Louis remarked that getting married had been very good for him, because it gave him his freedom. Nothing ever pleased me more than to hear that. When I was growing up, men often talked about marriage as a loss of freedom and spoke of their wives as “the old ball and chain” among other nasty expressions.
 
This got me to thinking about freedom, that it is more than just the absence of restraints, more than just being left alone. It also means feeling that you can take risks and explore life because you have an ally who will stand by you, someone who wants your life to be richer and not poorer, who believes as much as you do that barriers must be broken and that engagement in and enjoyment of the world is a sacred right.
 
Sometimes that ally can be another person, but sometimes it can be the government. The term Civil Rights in fact refers to rights that can only be enjoyed by those who live under an effective government that can secure, to use Thomas Jefferson’s phrase, those inalienable rights that may exist in theory but need a means of enforcement to exist in practice. 
 
FDR had understood that too. The jobs programs of the New Deal and the Social Security Act gave many Americans a degree of economic independence, even if they did not entirely cure the Depression. As one journalist put it, FDR may not have put us on our feet, but he kept us off our knees. Later politicians in the liberal tradition set by FDR enacted laws and created government agencies to expand and protect other Civil Rights, such as being recognized as a member of the public, with access to all amenities purported to be available to the public.
 
A series of Supreme Court decisions also expanded that tradition. People who preferred to continue excluding minorities and other groups they feared or disliked grumbled about “big government” and the loss of their privilege to discriminate, and sometimes the laws and agencies intended to enforce Civil Rights were and still are subverted by officials willing to accommodate those complaints. Even with laws and court decisions, we have learned, it is still necessary to have flesh and blood allies, living human beings determined to make and keep access to the full range of life a reality.

Freedom from Fear Part 2

By Sheila Patrick
On October 1, 1985, a new opportunity presented itself to Louis. He had recently met Deborah Cunningham, a vibrant young woman who had also contracted polio as a child and also lived with disabilities more severe than those that Louis lived with, but who, like him, had boundless energy and appetite for life along with a rigorous sense of dignity. 

She and Louis, along with Fred Dinwiddie, Nigel Shapcott and Michael Heinrich, formed a corporation called Access All Areas to replace a structure under Easter Seals with one run by and for citizens with disabilities. It is now the Memphis Center for Independent Living, one of many CIL’s all over the country that fight for people who have for generations been treated as perpetual children, at best, and, at worst, as people too strange to be part of the community. 

At first the Center concentrated on physical barriers to mobility and participation in community life.  They organized projects to build ramps so that people who used wheelchairs could get out of the house and insisted that restaurants, retail shops, theaters and government buildings be fitted with ramps and make other accommodations. 

Being visible was as important as getting through the door to such public places. For example, like Louis and me, Deborah was a big movie fan. When she asked the proprietors of the Ridgeway Theater where the accessible seating was, they showed her to a booth at the very back of the theater that was walled off on three sides so that a person in a wheelchair could see the screen but other patrons could not see them. 

Her response was, “I don’t do closets.” She proceeded to roll down to a better spot and parked herself in the aisle to enjoy the movie.

Eventually the proprietors just removed end seats on a few well placed-rows, so that patrons like Deborah and Louis could be regular members of the audience. The issue of visibility as well as access came up again with restaurants that wanted to put ramps at a back entrance out of sight, until they were told that this was not acceptable. 

The passage of the 1990 Americans with Disabilities Act provided a resource to compel private businesses and local governments to make accommodations, although it was frequently necessary to bring lawsuits to force compliance with the law. This was a shock to me, because I thought when someone broke the law all you had to do was call the police!  

One of these lawsuits resulted in the 1999 Supreme Court Decision, Olmstead v L.C, which dealt with people who were eligible for Medicaid funds being unnecessarily relegated to nursing homes, creating a very profitable industry. The court said that the ADA required that citizens with disabilities have the option of receiving attendant services in “the most integrated setting,” and that steering people into nursing homes rather than allowing them to receive attendant care in their own homes was effectively segregation. 

Even the Supreme Court could not break this pattern, though, because states found loopholes to avoid compliance. Tennessee was one of those states for a long time. Because Colorado was not, the Center helped people who wanted to get out of nursing homes to move there, a project they called the Underground Railroad, an escape to freedom. Eventually the Center and other advocates persuaded Tennessee to change the policy. 

My husband and the Center worked with the city to improve public transportation, make sidewalks safer for wheelchair users and make the negotiation of public streets safer with better curb ramps. They also backed the adoption by the City Council of a Visitable Homes Ordinance to require that new homes built with public funds have at least one accessible entrance and doors wide enough to allow wheelchair users to enter the homes of friends and relatives as well as public buildings. They argued that the population of people with disabilities is the largest minority in the country, of which any one of us can become a member in the blink of an eye and most of us will join if we live long enough. 

A big part of the Center’s work involves educating the greater community about false assumptions and careless language about disability. Too many Americans accept the specious ideology that avoiding hurtful and dangerous language in reference to other people is a wimpy cop-out to what they call “political correctness,” as if being rude and abusive took courage. 

In addition, the Center acts as an advocate between a person and his or her employer, landlord or others when instances of discrimination arise. It also works to liberate people who are unaware of opportunities for education and employment that are available to them or who have internalized the prejudices of other people.  

The requirement that the staff and board of directors of the Center be made up predominantly of people with visible disabilities means that they can demonstrate by example how one can reclaim autonomy over one’s everyday life. The Center is also dedicated to the idea that any political decisions involving people with disabilities must include the input of those people. One of the fundamental maxims of the center is NOTHING ABOUT US WITHOUT US. 

Although the Center receives some government funding, it must raise additional funds in order to continue to operate. There are a number of events throughout the year that raise money and also provide opportunities for celebration and socialization. One of those events is coming up very soon.
 
On Friday, August 3 from 6:00 to 9:00, the center is holding its fourth annual Deborah Cunningham Access Awards dinner in the East Atrium of the Crosstown Concourse. Its primary function is to recognize individuals who have provided leadership in advocacy, but it’s a party too, featuring entertainment by Hope Clayburn and Joyce Cobb. Tickets are $40 per person or $300 for a table of eight. 

It is a chance to learn more about what these advocates do and meet some of the leaders of the movement, as well as enjoy some good food and music.  The center is also still looking for sponsors for the event, in case any of you know of a business or organization that might like to be associated with the center and its philosophy.  

This year’s dinner is particularly a cause of celebration because it marks the twentieth anniversary of a successful pro se lawsuit brought by Deborah Cunningham against The Public Eye, a barbecue place in Overton Square that was willing to spend vastly greater funds in legal fees to avoid compliance with the ADA over a small step barrier at the entrance than it would have cost to comply. 

With the support of Attorney General Janet Reno, it became Deborah Cunningham and the United States v The Public Eye. Not only was the original step barrier replaced by a ramp, but other accommodations were required and the proprietors had to pay the government and the Center for their recalcitrance. It was a big victory over what initially seemed to be a small barrier, but each such victory helps to break down the walls that isolate and segregate members of the community from each other.
 

Louis Patrick

I began today with Afternoon on a Hill a poem by Edna St. Vincent Millay.  I love this poem by because is describes the peaceful happiness of someone who feels at home in the world. That is what my husband wished for himself and everyone else, what I think he meant by freedom.

As John Kennedy said of the hope to end the cold war, the greatest obstacle to that end is the belief that it is impossible. It is not impossible. The conquest of fear can make it happen. The cause of independent living is not just for people with disabilities or who have friends or family members with disabilities.

Any of us can become a part of this very large minority at any time, but more importantly, all of us need to consider the dignity and happiness of any of us to be our business. This is our country and we are all involved in determining what kind of country we will be.

Ac·cess (ak’ses), n. The right to enter or make use of.

Ac·cess (ak’ses), n. The right to enter or make use of.

by Louis Patrick

From the Declaration! Vol. 3 No. 3 March 1989

If you have to wage a war, you don't want to fight it block by block, building to building, house to house, room to room up and down every corridor, elevator shaft and stairwell, inch by bloody inch. That's street fighting at its worst. And that, quite literally, is the way we're having to wage the war against the architectural barriers that stand between us and our participation as full citizens of our communities, that keep us out of our churches, out of voting booths, county commission meetings and the workplace, that imprison us in our own homes.

We should be winning, at least on the front lines, in the suburbs. Every time a new building goes up - if the local officials responsible for enforcing Tennessee's Public Buildings Accessibility Act are doing their job, as they are in Memphis - disabled citizens take another building, another block. But we also have to wage a rear guard, guerilla war. If what we hear from our compatriots across the state is true, the Act is not being enforced in many communities. It's also questionable whether state officials have established the network necessary to get information to architects and contractors working here about Tennessee's accessibility law. And in too many rural towns and older neighborhoods there simply isn't enough new growth or renovation to begin to shift the balance toward a barrier free environment.

Not surprisingly, we often get so involved in the fight to take one more restaurant, one more office building, that we forget our ultimate goal. We want an open, accessible society where every trace of barriers has been eradicated, but we need to stand back and take a long, hard look at how we plan to achieve that aim.

The American National Standards Institute (ANSI) developed its first standards for accessibility in 1961, but the most important sentence in that document may be :"This standard does not establish which occupancy or building types are covered and the extent to which each type is covered."ANSI tells builders how to make a structure accessible, not that they have to. It's all tape measure, inches and feet; no teeth. We're looking for "have to," not just "how to".  

We want a law-with alligator teeth and bear claws - that requires buildings to be accessible. We also want that law to have the broadest possible scope, to apply to every place in and around every kind of structure.

When the Tennessee legislature passed the Public Buildings Accessibility Act in 1970, it relied on ANSI to tell builders"how to"make buildings accessible. The Act required "public buildings" to be accessible but didn't spell out what a "public building" was, though state owned or operated buildings "used generally by the Public" were clearly included. The Act was amended in 1974 to cover not just publicly owned or leased buildings but "any building in the free enterprise system," including factories and office buildings. However. It still failed to detail "the extent to which each type is covered," to specify, for instance, the percentage of parking spaces or motel rooms that should be accessible.

In 1977 Tennessee amended the Act to adopt the Handicapped Section of the North Carolina State Building Code. In doing so we adopted not only North Carolina's mandatory specifications but its broad, clearly defined scope as well. It applies to virtually every new or renovated structure except single family homes and duplexes. It requires that assembly areas integrate seating accessible to wheelchair users and persons with other mobility impairments, 1% each, with regular seating, that 2% of parking spaces be reserved for handicapped parking and that those spaces be marked with signs at eye level it requires that 5% of apartment units be accessible or adaptable for use by wheelchair users.

When we adopted North Carolina's Code we got a great big snout full of alligator teeth. Unfortunately, we forgot some of the bear claws. We also overlooked some of the honey our neighbors had smeared on their Code - and we apparently forgot to ask permission to use their work.

North Carolina built its Code from the ground (ANSI) up in consultation with representatives of both persons with disabilities and the building industry. Carolina also enacted a tax credit "to offset the additional cost of construction of [accessible housing] units,” a "Bill of Rights for Handicapped People" which guarantees "the right of access to and use of publicly - and privately - owned spaces" and established a Special Office for the Handicapped "directed by an architect to provide interpretations, technical advice and information on compliance with code and legislative requirements for” accessibility.

There seems to have been a considerable stir in Tennessee over accessibility since the successful suit over  the lack of integrated, accessible seating in the Liberty Bowl renovation. A lot of folks working here have been calling North Carolina to find out just what their law says. Understandably, North Carolina doesn't want to answer for Tennessee law. To top things off, demand for copies of "An Illustrated Handbook of the Handicapped Section of the North Carolina State Building Code" suddenly skyrocketed west of the Smokies just as Carolina had let the Handbook go out of print because they were working on a fairly extensive revision of the Code.

All of which has caused a few people to question the wisdom of departing from the the de facto national standard for accessibility, ANSI. Apart from the legitimate concerns of architects and builders who have to deal with a multiplicity of standards, Tennessee has a long way to go. Adopting ANSI or any other standard, even keeping the North Carolina Code, without taking many of the same steps as Carolina wouldn't be wise.

The North Carolina Code is a good, strong law. The officials I've talked to there have been quite helpful and have indicated their willingness to work with Tennessee. It's up to us to establish a liaison with them. It's also up to us to enforce our chosen standard and to provide technical assistance and, hopefully, incentives to the building industry to comply with that standard. We need to get our act together.

NO THANKS!

By Louis Patrick

I got into one of "those" discussions recently. A fellow I was talking to on the telephone  began to harangue me about "those" lazy people who live in the projects. Even with opportunities aplenty and years of practice, I still have no idea of how to grapple with the prejudices and misconceptions behind such “discussions" in a positive manner. Instead, I tried to divert our chat to the disincentives which persons with disabilities face in trying to work, the loss of not only money benefits, but of medical insurance, of housing subsidies, the problems of trying to pay for attendant care. ‘Oh, no!’, the person said, ‘I wasn’t talking about handicapped people.’

He didn't use the words, but what he meant was that disabled persons are among the"deserving poor." That phrase is supposed to imply that while we are indeed poor, it's through no fault of our own, through no sin of sloth or laziness that we are so and that we thus "deserve" to be helped, to be supported (albeit poorly), to be taken care of.

Many of us buy into that image. Consider for a moment, however, whether that doesn't buy us into the reverse side of that coin: disabled people "deserve" to be poor.

There's no question that disabled people have "special" needs, that we need services beyond those other students require to get an education, that we have to stretch an already limited budget to buy equipment that allows us to get around or write or talk. The list could go on, of course. What's left out of a Social Security check to buy theater tickets with?

lf, however, we, as disabled people, continue to focus our hopes on charity and our efforts on obtaining “special" discounts and favors, we will only succeed in perpetuating our poverty and dependency. Our problem isn't that we don't have enough coupons in our our wallets. It's cash we're short of. Let’s stop wasting time begging and start asking that are responsible - to us - for spending millions of dollars for vocational rehabilitation why employment opportunities for persons with disabilities are still virtually nonexistent. Let's get real, honest to God, bloody tired of being poor!

With the proper "special" education and training and the proper "special" equipment we can function competitively in society. More importantly, we can become fully contributing citizens. We have an “inalienable” right to life, liberty and the pursuit of happiness,” a right to take responsibility for ourselves that we can't give away and no one can take from us.

We owe our loyalty to those who fight for equality and to those who “want the option of not having to say 'thank you'"; a quote attributed to John Hockenberry of National Public Radio. We have an obligation to one another to say "No thanks. I’d rather be able to pay my own way.”

Louis David Patrick, Jr.

Louis David Patrick, Jr. 1947 - 2017

Memphis, TN
Louis David Patrick, Jr. passed away on June 1 from

complications of adenocarcinoma. He was born in Memphis in 1947 to Louis Patrick Sr. and Daisy Patrick. Although Louis contracted polio in 1950 and lost the use of his legs, he was very independent until the last few months of his life. He attended the Shrine School, Sherwood Elementary, Overton High school and finally Memphis State University, where he met and married Sheila DeLozier in 1968 and earned his BA in 1975 with a major in History.

Although he worked at a number of jobs, the one that was closest to his heart was with the Center for Independent Living. On October 1, 1985, Louis, Deborah Cunningham, Fred Dinwiddie, Nigel Shapcott, and Michael Heinrich signed articles of incorporation for Access All Areas, the declaration of independence for MCIL as an organization run and controlled by people with disabilities. Until then, what was to become MCIL was part of West Tennessee Easter Seals, which was not controlled by and for people with disabilities. 

Louis described that life-changing experience this way: "I had been 'passing'--living and working outside the doubly segregated world of disability--since I had started public school at Sherwood Junior High in 9th grade. Had the CIL not been a very, very different way of serving people with disabilities, I would never have been interested in working there. Deborah Cunningham set me on the road to understanding the history and strength of the independent living movement."

After retiring from Fed Ex in 2003, Louis served on the Board of Directors for MCIL, several times as president. He chaired two committees for the MACCD, Memphis Advisory Council for Citizens with Disabilities: the Memphis Transportation Advisory Committee (MTAC) and the Housing Community Access Committee (HCA). He worked for the adoption by the City Council of a "visitability" ordinance to assure that new homes built in Memphis with public funding be more accessible to individuals using wheel chairs. He also worked on accessibility for the Liberty Bowl a Citizen's Pedestrian Advisory Council to improve sidewalks and other pedestrian facilities in Memphis, participated in a HUD investigation of fairness in renting apartments to individuals with disabilities, and submitted recommendations to the Overton Park Conservancy to improve accessibility in that park. Louis also worked on an Advisory Committee of Memphis' Engineering Department to form a "Pedestrian & Schools Safety Action Plan" and the Memphis Metropolitan Planning Organization's "Mobility Summit." Louis also worked with the University of Tennessee's Physical Therapy Department, allowing students to "practice" on himself, teaching them about his own experience. He also worked for many years with state representative Mike Kernell.

All these forms of advocacy and activism tell only a fraction of the story of who Louis Patrick was, however. He was fascinated with language and loved to discuss history and genealogy. His appreciation of beauty and joy of life were infectious. He was the epitome of the ideal gentleman, tender hearted and generous but firmly grounded in principles of justice and decency. He is survived by his aunt, Melrine Roleson, and a host of cousins and nieces and nephews who admired and loved him dearly.

Visitation will be held on Thursday, June 8 from 5 to 7 p.m. at the Forest Hill Cemetery mid-town at 1661 S. Elvis Presley Blvd. The memorial service will be at the same location on Friday at 2 p.m. Those who would like to make a contribution in lieu of flowers are encouraged to send donations to the Memphis Center for Independent Living at 1633 Madison Ave, 38104. The Center has also invited guests to attend a reception at that location following the service.

 
Published in The Commercial Appeal on June 8, 2017

RIDIN' AIN'T WRONG - By Louis Patrick

RIDIN' AIN'T WRONG

By Louis Patrick

EDITOR’S NOTE: This article is from the Memphis Center for Independent Living’s Newsletter: The Declaration, Vol. 3 No. 1 January 1989

Every now and then I take my glasses off. Not very often mind you, not even to rest the bridge of my nose because I'm blind as a bat without them. The screen of my computer is about twenty inches from me as I write this, but if I stare over the top of my glasses the letters  are a complete blur. I even fall asleep wearing my glasses. If ever anyone was “confined” to glasses, I am.

Yet I don’t feel confined; quite the opposite. Glasses  not only give me nearly normal vision, they free me from worrying about what would otherwise be a serious and confining vision problem.

English, to My knowledge, has never tolerated the expression."confined to glasses.” Glasses have become quite fashionable lately even as contact lenses have become more comfortable and affordable. They've become "cool," what the Disability Rag calls "disability cool."  We do talk about a person being "confined to wheelchair," however. And wheelchairs aren't supposed to be cool.

What's the difference in the way we use language to talk about glasses and the way we talk about wheelchairs? Once upon a time there were no wheelchairs. There never has been a time, however, when there weren't some people who couldn't walk, talk, see or hear. Disability has always been - and always will be - an intimate and integral part the human condition. Being mortal doesn’t just mean that you’re going to die some day. It also means you have a physical body that’s subject to occasional, sometimes permanent , breakdowns.

In those times before the wheelchair, or the wheel, people who couldn't walk didn't have any way of getting around unless someone carried them. They were virtually immobile, laying months, years on end in the same room. It's that mythic memory and image of interminable sameness, poverty, and complete dependence on others, that has become inextricably bound up with the idea of persons with mobility impairments and those of "confinement," being bound and "ridden." It's that image, associated with those words, which flashes instinctively into people's minds.

Then came the wheel. It moved goods, crops and animals, it moved people, able-bodied people. Then - finally - it moved people with mobility impairments. Today people who have trouble moving are able to move more and more easily, more and more independently. Now even people who don't have the physical ability to move more than their shoulders or heads can get around in specially equipped electric wheelchairs. And what happens? The public talks about such folks being "confined” to a wheelchair" as being confined by the vary tool which allows them unprecedented freedom and mobility. The wheelchair along with shoes, cars, boats, planes and trains are all tools for mobility. It's a cruel use of language to associate tools of freedom with tools of slavery.

These words stifle and denigrate the use of reason and technology to extend the abilities of disabled people. We can't take a Sunday stroll to Saturn but tools used to extend our "eyes" and "ears" have been there. Are we "confined" to our Reboks because they can't get us to Saturn without the use of other tools? What happens when we fail to accept the use of tools, for permanently, irrevocably lost abilities of our bodies?

Rheta Grimsely Johnson, a writer for The Commercial Appeal, wrote a story about a veteran who existed in the netherworld of rural Tennessee,, an amputee who was “confined to his porch."

Nonsense! He didn't have a wheelchair ramp. We've walked on the moon after we rode all but the last few feet. If we can  put somebody on the moon, we can get somebody off his porch! What are tools for? Not being able to “cure” disabilities doesn’t absolve us from using our brains.

These words help perpetuate a vicious rumor that wheelchairs are a drug even more powerfully addictive than heroin. If ever, even for a second, you sit in one you’ll never again stand and walk! You’ll “give up!” Haven’t you ever seen anyone get up from a wheelchair? Happens all the time. More and more folks are finding out that if you have a lot of trouble walking, you shouldn't beat your head against the wall trying to look normal when you can save all kinds of energy and live more safely and ignore independently riding in a wheelchair. If someone is having that much trouble walking, why doesn't he use a wheelchair? They might be somewhat inconvenient but this is true only because we don't design houses and our environment properly.

We spend billions of dollars a year to create and maintain our highway, waterway and airway systems. Ain't nothin' wrong with ridin'. It's a fine ol’ American tradition.

Get Out in the Community! -by Louis Patrick

Get Out in the Community!

Being part of the community is worth the struggle

by Louis Patrick

My wheelchair is five years old, so, theoretically, Medicare would approve my getting a new one. I talked to the company I’ve been dealing with for several years, and we agreed on the specifications for a new chair. I should have known things are never so easy. I got a call last week from someone in the company telling me that Blue Cross had turned me down. They needed more information—preferably medical, of course. He said the company would re-file.

It’s been my experience that it’s not wise to leave such matters unattended. I called BCBS’s “customer service” line and asked to speak to someone in the group who had denied my claim.  The sweet young rep explained that she couldn’t do that; they had different phones. She looked up my records and told me that, yes, my claim had been denied, they didn’t have enough information to establish that I needed an ultra-light chair, but that I had the right to “appeal.” They had not received an appeal from the company yet. She called them and found out they had not have received the denial by mail yet; she would fax it to them. If I liked, she could fax or mail the appeal application to me, but, no, they aren’t allowed to use email.

Now, first thing, I’m 68 years old, as is my wife. Silly me, that alone seems like reason enough; nobody my age should have to lift a tank of a wheelchair. I didn’t think to tell the rep that, however. I did tell her that I’m very active; I’m out and about very often through the week. I drive and need to be able to get my chair in and out of the car easily. Also, my wife needs to be able to get the chair in and out of the trunk when she and I are riding together. And I reminded her that being active in the community, dealing with other people, is a well proven tonic for health. Staying bottled up at home alone is a killer.

Insurance companies are great believers in Nancy Reagan’s philosophy: “Just say no.” Whenever possible, deny claims. Adjudicate. Wrap up the claim in red tape. Many, if not most, people will simply accept the denial. I was at the [Memphis Center for Independent Living] talking about this with a good friend. She had just been denied payment on a feature that reclines the chair, taking pressure off the tush. She was told she was eligible for a “Group 2” chair but not a “Group 3” chair. Again, to be active in the community for several hours the reclining feature is very helpful—and healthful.

I’ve also heard before that Medicare was clamping down on heavy duty wheelchairs unless needed IN the home. This is a straight-forward matter of health: Get out of the house! Get out in the community! It’s better for you.

Never take no for an answer. Fight for the equipment you need to stay active.

EDITOR'S NOTE: Louis Patrick died June 1, 2017. He was a long-time member of the Board of MCIL. He wrote this for the MCIL Journal and the benefit of our community back in 2015.

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.

Get out in the community!

Being part of the community is worth the struggle

By Louis Patrick

My wheelchair is five years old, so, theoretically, Medicare would approve my getting a new one. I talked to the company I’ve been dealing with for several years, and we agreed on the specifications for a new chair. I should have known things are never so easy. I got a call last week from someone in the company telling me that Blue Cross had turned me down. They needed more information—preferably medical, of course. He said the company would re-file.

It’s been my experience that it’s not wise to leave such matters unattended. I called BC/BS’s “customer service” line and asked to speak to someone in the group who had denied my claim.  The sweet young rep explained that she couldn’t do that; they had different phones. She looked up my records and told me that, yes, my claim had been denied, they didn’t have enough information to establish that I needed an ultra-light chair, but that I had the right to “appeal.” They had not received an appeal from the company yet. She called them and found out they had not have received the denial by mail yet; she would fax it to them. If I liked, she could fax or mail the appeal application to me, but, no, they aren’t allowed to use email.

Now, first thing, I’m 68 years old, as is my wife. Silly me, that alone seems like reason enough; nobody my age should have to lift a tank of a wheelchair. I didn’t think to tell the rep that, however. I did tell her that I’m very active; I’m out and about very often through the week. I drive and need to be able to get my chair in and out of the car easily. Also, my wife needs to be able to get the chair in and out of the trunk when she and I are riding together. And I reminded her that being active in the community, dealing with other people, is a well proven tonic for health. Staying bottled up at home alone is a killer.

Insurance companies are great believers in Nancy Reagan’s philosophy: “Just say no.” Whenever possible, deny claims. Adjudicate. Wrap up the claim in red tape. Many, if not most, people will simply accept the denial.

I was at the Center talking about this with a good friend. She had just been denied payment on a feature that reclines the chair, taking pressure off the tush. She was told she was eligible for a “Group 2” chair but not a “Group 3” chair. Again, to be active in the community for several hours the reclining feature is very helpful—and healthful.

I’ve also heard before that Medicare was clamping down on heavy duty wheelchairs unless needed IN the home. This is a straight-forward matter of health: Get out of the house! Get out in the community! It’s better for you.

Never take no for an answer. Fight for the equipment you need to stay active.

Louis Patrick is on the Board of MCIL.