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>From today's new york times magazine
>
>November 23, 2003
>The Disability Gulag
>By HARRIET McBRYDE JOHNSON
>
>My father died when I was 2, and I lost my mother when I was 5.''
>Throughout my
>childhood, that's what Grandmother says. She's a fine storyteller with rare
>gifts for gross delicacy and folksy pomposity, but she doesn't give the
>details, and we don't ask. To me, it's enough knowing that she's an orphan,
>like Heidi -- like Tarzan even! What else is worth knowing?
>
>Eventually our cousins tell us. When Grandmother was 5, her mother didn't
>die.
>She was placed in an asylum. There she lived until Grandmother was in her
>20's. There she died.
>
>The news seems to answer some questions about Grandmother. Why does an
>independent thinker set such store on conventional behavior? Why did she
>marry
>a ridiculously steady Presbyterian?
>
>I think it's fear. Fear that one day something will go wrong and she, too,
>will be taken from her family, snatched from the place she has made in the
>world, robbed of her carefully constructed self and locked up for life.
>
>I know that fear. I share it.
>
>Grandmother lost her mother in the early 1900's to what was considered
>progressive policy. To protect society from the insane, feebleminded and
>physically defective, states invested enormous public capital in
>institutions,
>often scattered in remote areas. Into this state-created disability gulag
>people disappeared, one by one.
>
>Today, more than 1.7 million mothers and fathers, daughters and sons, are
>lost
>in America's disability gulag. Today's gulag characterizes isolation and
>control as care and protection, and the disappearances are often called
>voluntary placements. However, you don't vanish because that's what you
>want
>or need. You vanish because that's what the state offers. You make your
>choice
>from an array of one.
>
>But now the gulag faces a challenge from people who know the fear
>firsthand.
>
>t's 1978. Just out of college, I'm working for a local disability rights
>organization. I'm riding, and also in my small way powering, a new wave, a
>shift from care and protection to rights and equality for people with
>disabilities. Part of my job is to give technical assistance on the new
>Section 504 regulations, which ban disability discrimination where the
>federal
>dollar goes. This gig has me squirmy. I'm consulting with Coastal Center, a
>state institution housing people with developmental disabilities --
>primarily
>cognitive impairments and some severe physical disabilities -- about 20
>miles
>from my home in Charleston, S.C.
>
>My paycheck won't support a lift-equipped van, so I go by car. I am
>transferred to my portable wheelchair and rolled into a room full of
>functionaries. How to establish an authoritative presence? I'm young and
>small
>and disabled and female. I seem to get away with the female part, but the
>rest
>is tough.
>
>Still, once I get going I start to think I can talk circles around the very
>best functionaries. In no time, it's almost noon. We're breaking up.
>
>The moment has come. ''I have some old school friends in Cottage D-4,'' I
>say.
>''Could I possibly have lunch with them?''
>
>There's some surprised hemming and hawing, but, yes, certainly, if I like.
>An
>administrative assistant is tasked to push me there.
>
>The ''cottage'' is a big rectangle in cement blocks and brick veneer. One
>side
>houses boys -- adult ''boys'' -- and the other is for ''girls.''
>
>My pusher leaves me in the central day room, parked against a wall. It
>seems
>both chaotic and lifeless. High on a wall, a TV blares, watched by no one.
>Ambulatory residents move across the floor with no apparent purpose. Along
>the
>walls, wheelchair people are lined up, obviously stuck where they're placed
>--
>where we're placed, I should say, because I, too, am parked against a wall,
>unable to move -- like knickknacks on a shelf.
>
>Six of these knickknacks are my old friends. Their eyes are happy to see
>me.
>Their bodies are beyond happy: wild, out of control. Cerebral palsy does
>that.
>I make myself grin.
>
>My pal Thomas is a cool customer. He looks straight at me, then cuts a
>rueful
>look at the others spazzing out. I can't hear his soft voice over all the
>racket, but I know he's offering formal words of welcome.
>
>Then we're moved en masse. Plates are put in front of us, with measured
>food
>in bite-size pieces. I'd like butter and salt, water instead of milk, but
>this
>isn't a restaurant. Thomas is parked beside me, and we chat about old times
>at
>our special crip school. We talk politics, as we did as kids.
>
>Some staff members sit and feed residents. Others come and go. They talk
>loudly to one another, and we tune them out. Then a woman's voice
>penetrates
>my skull, reaches my brain. ''Is this the new girl from Whitten Center?''
>
>I'm aware that the state's oldest institution is trying to reduce crowding.
>I
>look around for the new girl from Whitten Center.
>
>She asks again, ''Is this the new girl from Whitten Center?''
>
>I realize that she means me.
>
>I know it's irrational, but I want to scream. I can't, because they don't
>like
>screaming here, and in this panic I don't know what to do if I can't
>scream.
>
>My friends, amused, grimace and writhe. Please don't start laughing, I want
>to
>say. Don't go all spazzy!
>
>''Is this the new girl from Whitten Center?''
>
>Thomas answers. ''She's our friend. She's from outside.'' He has come to my
>defense!
>
>The loudmouthed staff members don't hear. ''Who is this girl?''
>
>''She's from outside.''
>
>''Did you say from outside?''
>
>Thomas coughs. ''Look at her hair.''
>
>The aide studies the shiny braid that falls to my knees. She remarks on my
>pretty dress and my real gold bangle bracelet. Obviously from outside.
>Speaking to me now, she asks simple questions. I manage to explain how I
>know
>these people, where I live, what I do. The staff members are amazed that
>someone with such high care needs went to college, has a job, lives
>outside.
>All agree that I'm high-functioning, mentally.
>
>Time to go home, but first I have to use the bathroom. Why did I sip that
>coffee in the conference room? Oh, well. At least this place has beds and
>bedpans and aides who handle them regularly. I ask for help.
>
>Aides scurry about to improvise a screen. ''I'm sorry there's no privacy;
>we're just not set up for visitors to use bedpans.''
>
>What about residents? Is privacy only for visitors with gold bracelets?
>
>I can't ask; I'm begging a favor. In front of my friends, I can't demand
>special treatment. If they routinely show their nakedness and what falls
>into
>their bedpans, then I will, too. Despite my degree and job and long hair,
>I'm
>still one of them. I'm a crip. A bedpan crip. And for a bedpan crip in this
>place, private urination is not something we have a right to expect. I say
>it's O.K.
>
>It's a two-person job the way they do it. My way is quicker and easier, but
>they get their instructions from their bosses, not from the people they
>help.
>They try to hide me with sheets.
>
>That evening, I tell my family the funny story about how I was mistaken for
>the new girl from Whitten Center and how Thomas and my long hair saved me
>from
>life in prison. I don't tell them it wasn't funny when it happened. I don't
>tell how the fear felt.
>
>
>It comes from a different experience, but I'm convinced that my fear is the
>same fear Grandmother knew. Because of a neuromuscular disease, I have
>never
>walked, dressed, bathed or done much of anything on my own. Therefore, I am
>categorized as needing special treatment and care.
>
>To Grandmother, that meant extra concern, special pleasure when things went
>well, tangible help at times. Most summers, she kept me at her house for a
>week or so with my cousin Mary Neil. The widow of a prosperous small-town
>pharmacy owner, Grandmother let us roam the town with whichever teenager
>she
>had hired to help. Anyone could do the job, because I explained everything
>step by step; Mary Neil learned the drill, too. Free of hands-on duties,
>Grandmother entertained herself and us with her inexhaustible store of
>memorized poetry, quoted inappropriately. Squeezing into an old-fashioned
>girdle, she would say, ''What strange Providence hath shaped our ends?'' or
>''Oh, that this too too solid flesh would melt.'' Coping with my special
>needs
>wasn't all that onerous.
>
>To the larger world, my needs had serious implications. I couldn't go to
>school or to camp with my brothers and sister. I was exiled to ''special''
>places. As my peer group entered adolescence, the gulag swallowed about
>half
>of my classmates. Four went in 1969. They ''graduated'' into an institution
>after a ceremony with caps and gowns and tears. Others, including Thomas,
>just
>didn't come back after summer vacation. My friends' parents, asking the
>state
>for help, were persuaded to place them where they would get the specialized
>care they supposedly needed.
>
>In fact, until they disappeared, my friends got their care from people with
>no
>formal training. The main difference between them and me was economic. My
>family could afford hired help. Thus insulated, they didn't go to the
>state,
>and the state didn't tell them it puts people like me away.
>
>I knew my family wasn't like F.D.R.'s or Helen Keller's; they didn't have
>the
>means to set me up for life. I was more like one of my girlfriends, who had
>lived with nice parents in a nice house with a nice hired lady to take her
>to
>the park to meet me and my lady -- until something went wrong and she
>disappeared into Coastal Center. Whenever my parents scrambled to pay for
>something unexpected, a part of me saw my freedom hanging in the balance. I
>learned early that privilege doesn't always last.
>
>The nondisabled world sees powerlessness as the natural product of
>dependence
>and dependence as the natural product of our needs. However, for
>nondisabled
>people, needs are met routinely without restricting your freedom. In the
>gulag, you have no power. The gulag swallows your money, separates you from
>your friends, makes you fearful, robs you of your capacity to say -- or
>even
>know -- what you want.
>
>The day I visited Coastal Center, I was beginning an interesting career and
>should have felt that the world was all before me. Instead, worries nagged
>me.
>What if there isn't enough money? What if family can't take care of me?
>
>Back then, my best hope was to die young. My disability would progress
>until I
>needed a ventilator. Then, near the end of my life, I figured, I'd slide
>into
>my slot in the gulag.
>
>ll it takes to teach me how wrong I have been is about 45 seconds in the
>company of a man named Ed Roberts. It's 1979. He's speaking in Arlington,
>Va.
>
>In the small world of disability rights, he is a star with a famous story.
>He
>is paralyzed from the neck down as a result of childhood polio. In his
>youth,
>he was denied services by California's Department of Rehabilitation for
>being
>too disabled to work. A decade and a half later, he became head of the
>department. In between, he fought his way into the University of California
>at
>Berkeley and, with other severely disabled activists, helped set in motion
>the
>disability rights movement, which is now challenging the gulag's right to
>exist. It is pushing for a shift away from public financing for
>institutionalization and to public financing for personal assistance,
>controlled by us. The government should pay for the help we need, and it
>should not force us to give up our freedom as the quid pro quo.
>
>Never was a big star more frail. Physically, his power chair overwhelms
>him.
>And there's more. He gets each breath from a machine; his speech follows
>the
>rhythms of the ventilator whoosh. With each whoosh, he is changing my
>worldview.
>
>It's not what he has done. Not what he is saying. Not who he is. It's his
>presence. Whoosh. His bad-boy delight in truth-telling. Whoosh. His hellcat
>gusto for proving the world wrong. Whoosh.
>
>He is decrepit and tough and amazingly funny. He is a big state agency head
>unlike any the world has ever seen.
>
>In less than a minute, Ed shows me that I have been wrong about people with
>vents, just as the nondisabled world has been wrong about me. Whoosh.
>
>A life like his can turn a life like mine upside down. Whoosh. And lives
>like
>ours can turn the world upside down -- or maybe set it right side up.
>Whoosh.
>
>t's 1984. I'm living in Columbia, S.C., 100 miles from my family, taking
>advantage of new possibilities. Until the Section 504 regulations,
>disability
>discrimination by universities was routine and unapologetic. Now, at the
>University of South Carolina law school, I am one of six wheelchair users.
>Five of us use power chairs; without someone's help, we can't get out of
>bed.
>As schoolmates strut in power suits, we whir around with book bags hanging
>from our push handles and make bottlenecks at the elevators. I think of us
>as
>a counterculture that challenges the get-ahead Me Decade. Most people, when
>they think about us, operate under the delusion that we're inspirations.
>
>Between classes, I catch up with Dave, a classmate who is quadriplegic as a
>result of spinal cord injury. There's a good movie at the student union
>tonight. Let's go. O.K., and a burger before. Fine. A plan.
>
>Nearly. First we repair to adjoining pay phones to reschedule our
>afternoons.
>Each of us grabs a passing student to dial. Busy signal. Try this number.
>No
>answer. Try that first number again. Hey, can you do 4 instead of 5? Then
>another call. No answer. Try this one.
>
>My student dialer has to run. Another takes his place.
>
>Hey, I'm going out. Can we do 10 instead of 9? Do you know where so-and-so
>is?
>Hi. Can you unpack my books at 3?
>
>Between us, it takes about a dozen calls.
>
>''Dave,'' I say, ''this is some crazy way to live, ain't it?''
>
>He gives his diffident C-student shrug. ''Yeah. When I was injured, I
>didn't
>want to live this way. They said I'd adjust, but I wanted to die. Well, you
>know, the guy I was then, he got what he wanted. He died. I'm a different
>guy
>now.''
>
>It's a complicated life, to schedule in advance each bathroom trip, each
>bath,
>each bedtime, each laying out of our food and big law books, each getting
>in
>and out of our chairs. But it can be done. We're doing it. We can do what
>we
>want. No need to get anyone's permission. No need to have it documented in
>any
>nursing plan or logged onto any chart. No one can tell us no.
>
>We can meet for a burger and a movie if we want.
>
>
>Every so often, there are efforts to try something different for young
>disabled people. When Dave and I were in law school, the university got one
>dormitory licensed as a care facility. Medically, I qualified for placement
>there, and the promise of around-the-clock aides sounded appealing when I
>had
>never lived away from home. Financially, I was too rich for Medicaid and
>way
>too poor for the self-pay rate. Dave had Medicaid, but his life had already
>taught him the value of freedom. The students in the on-campus nursing home
>helped me learn the same lesson. Even with a good staff and decent
>conditions,
>they were robbed of basic choices. The staff members were controlled by the
>facility, not by the students who lived there.
>
>I relied mainly on resources available to any student. Because of Section
>504,
>I had access to student housing, transportation and cafeteria service. A
>small
>grant from a disability agency, a student loan, work study, summer earnings
>and a Strom Thurmond Scholarship, of all things, covered the usual costs of
>law school, plus three and a half hours of help per day from student
>workers I
>selected. Sometimes I kicked in a bit extra on the rent to get an
>especially
>helpful roommate. It's true that I depended on the kindness of strangers
>and
>friends and sometimes wondered how I would hold it together. But always
>there
>was some lucky break.
>
>Sometimes the break was a check from Grandmother with a note, ''Be prepared
>a
>strict account to give.'' Or, ''Squander in riotous living.'' Either way,
>she
>showed that she still rejoiced in my success and also worried about me.
>
>By this time, she also worried about her own place on the edge of the
>gulag.
>As age brought disabilities, she got my cousin Mary Neil to move in.
>Grandmother had enough money to see her through, but not if it had to
>purchase
>lots of long-term care. The state's only solution was to make her poor and
>then foot the big bill for lockup in a nursing home.
>
>The nursing home is the gulag's face for people like Dave, me and
>Grandmother.
>That is where the imperatives of Medicaid financing drive us, sometimes
>facilitated by hospital discharge planners, ''continuum of care'' contracts
>or
>social-service workers whose job is to ''protect vulnerable adults.''
>Pushed
>by other financing mechanisms, people with cognitive disabilities land in
>''state schools,'' and the psychiatrically uncured and chronic are
>Ping-Ponged
>in and out of hospitals or mired in board-and-care homes. For all these
>groups, the disability rights critique identified a common structure that
>needlessly steals away liberty as the price of care.
>
>In 1984, the general thinking couldn't go beyond nicer, smaller, ''homier''
>institutions. With my experience as a high-maintenance, low-budget crip
>surviving outside the gulag, I offered myself in local meetings, hearings
>and
>informal discussions as an independent living poster girl. I explained that
>certain states, like New York, Massachusetts, Colorado and California,
>offer
>in-home services.
>
>But, people said, South Carolina is a conservative state.
>
>I talked up the need for comprehensive civil rights legislation. Extend
>Section 504's principles to all levels of government and the private
>sector.
>
>It'll never happen, people said. The civil rights era has passed.
>
>We got civil rights legislation -- the Americans With Disabilities Act --
>in
>1990. It's a fluke, people said. It won't be enforced.
>
>In 1995, the United States Court of Appeals for the Third Circuit ruled
>that
>the A.D.A. bans segregation. Needless isolation of people with disabilities
>in
>institutions is segregation. That's a liberal circuit, people said. The
>Supreme Court will reverse.
>
>In 1999, the Supreme Court, in Olmstead v. L.C., affirmed that needless
>institutional confinement violates the A.D.A. Fine, but it's just words on
>paper, people said. The financing still drives us into institutions.
>
>That's very true. But the movement has been treating Olmstead rights as if
>they're real, using the court's legitimacy to demand a wide variety of
>programs, like in-home care, on-call and backup help, phone monitoring,
>noninstitutional housing options, independent-living-skills training and
>assistive technology. We're also going after red tape, legal restrictions
>and
>the mind-set that says that if you need help, you need professional
>supervision.
>
>t's the spring of 2002. I'm testifying before a subcommittee of the South
>Carolina State Senate. Beside me is my friend Kermit.
>
>Kermit calls me his big sister in disability. In fact, he's downright
>massive
>and a generation older than I am, but I'm his senior because he became a
>quad
>two years after I was born into disability.
>
>The black battery box on his chair sports two stickers. The shocking pink
>one
>is from Mouth, a radical disability magazine. It says, ''Too sexy for a
>nursing home.'' ''It's true, you know,'' Kermit often explains. ''I did
>seven
>years inside. In so long, I felt weird when someone took me out, like I
>didn't
>belong. But I was too sexy to stay. I took up with one of the aides and
>married my way to freedom.'' That marriage ended years ago, and Kermit no
>longer has family help, but he will never go back. His other sticker, plain
>white, says, ''Yes 977.'' He had them printed today. They're about the bill
>we're here for.
>
>Senate Bill 977 would amend state law to exclude ''self-directed attendant
>services'' from the legal definition of nursing. Current law presumes that
>all
>hands-on physical care, for pay, is the practice of nursing and must be
>provided by or supervised by licensed personnel. The nursing profession has
>jurisdiction over our bodies and decides when to delegate authority. Those
>who
>handle us are supposed to get their instructions from a written nursing
>plan,
>not from us.
>
>The law hasn't been enforced against self-pay crips like Kermit and me, but
>federal law requires Medicaid and Medicare to abide by the state nursing
>law.
>That means that their beneficiaries must accept whatever comes from a
>licensed
>agency. Agencies typically can't cover Christmas morning, late nights out
>or
>many bathroom trips spread out over the day. Because the easiest place to
>get
>nursing is in a nursing facility, this law becomes another path into the
>gulag.
>
>Kermit and I know what works. Through informal networks, we find people to
>do
>what we need. Because we are the ones doing the delegating, we are free.
>Kermit used his freedom for a civil service career; today he uses $20,000
>per
>year of his retirement savings to pay for that freedom, about half of South
>Carolina's Medicaid nursing home rate. With family backup, I get by with
>the
>irregular income of a solo law practice, stashing money in good years to
>cover
>bad ones. Our bill would legalize the way we live. It would also remove a
>legal barrier so that we can agitate for South Carolina Medicaid to finance
>self-directed services and make real choices possible.
>
>The subcommittee is bothered about safety. The administrator for the Board
>of
>Nursing argues that complications like pressure sores and infections can be
>fatal. Nursing supervision is needed, she says, to recognize the danger
>signs.
>
>I wish Kermit were testifying. He has been self-directing very complicated
>stuff, and he endures, more than 40 years after his accident. He also has a
>great physical persona. His stillness communicates rock-solid strength. His
>whiteness -- a result of avoiding Columbia's killing sun -- is not so much
>pale as gleaming. But he doesn't like public speaking. He is happiest
>finding
>people in nursing homes with dreams of freedom, helping them make the
>break.
>It's underground railroad work, and I'm ashamed to say it's not for me. I
>still panic when I go into those places. Let me talk to the functionaries.
>
>So I explain our reality to the senators. We learn to recognize our danger
>signs. We care about our own safety. We can decide when to consult a
>professional, as nondisabled people do.
>
>And, incidentally -- bad things have been known to happen even when a
>nursing
>plan is in place.
>
>Inevitably, the senators look for a middle ground. What if we allow
>self-direction for ''routine'' procedures like bathing and dressing, but
>retain nursing control over ''nonroutine'' procedures like vent care and
>catheters?
>
>Kermit's craggy face falls. They're talking about fixing the law for me,
>but
>not for him -- or for Ed Roberts, who lived on a ventilator, or future me.
>
>I have been advised to sidestep the gory stuff, but here we go. ''Senator,
>if
>you need a urinary catheter inserted every time you need to go, say three
>to
>six times per day, that becomes a routine procedure -- for you.''
>
>I sit so low, I can see, under their table, all of the senators crossing
>their
>legs. I have their attention.
>
>They question me about procedures involving tubes, needles, rubber-gloved
>fingers, orifices natural and man-made. I won't flinch. Never mind that
>Grandmother would consider all of this indelicate. ''We know how to do
>them.
>And all these procedures are commonly done by unpaid family members. That's
>entirely legal, and the nurses don't mind. The nursing law isn't about
>safety
>and professional qualifications. It's about who can get paid.''
>
>One senator is a fundamentalist-Christian Republican, the kind who says
>that
>the anti-sodomy laws should be strengthened and enforced. ''Ms. Johnson,
>you've explained why this bill won't put people at greater risk, but I
>don't
>understand why you care enough to travel from Charleston to push for it.
>
>''Two reasons, Senator. One is, changing the law will free up resources to
>meet needs that aren't being met now. With this change, we can push
>third-party payers like Medicaid to fund more options, make the money go
>further. Home care in the aggregate costs less than locking people up.
>
>''The other is simpler. I want the legal right to say who comes in my
>bedroom
>and who sees me naked -- same as you do, Senator!''
>
>Redness rises from the senator's tie and washes up his face. Once we have
>him
>blushing, the others fall in line. The favorable vote is unanimous.
>
>We roll outside. My teal minivan is parked near Kermit's ''Freedom Van'' --
>a
>white vehicle with controls he can operate with his limp fingers in metal
>splints.
>
>Kermit stops. ''You done good, girlie.''
>
>No one but Kermit gets to call me girlie. I sometimes call him Mount
>Rushmore.
>
>
>Our bill became law on July 1, 2002, in time for Independence Day. Self-pay
>people won the right to control our bodies, but getting public financiers
>to
>allow the same flexibility is a continuing struggle.
>
>Ultimately, saving ourselves from the gulag will take more than
>redefinition.
>It also takes money for in-home services. But in a sense, we're spending
>the
>money now -- $20,000 to $100,000 per person per year, depending on the
>state
>-- for institutional lockup, the most expensive and least efficient service
>alternative.
>
>For decades, our movement has been pushing federal legislation, currently
>known as MiCassa, the Medicaid Community Assistance Services and Supports
>Act,
>to correct the institutional bias in public financing, especially Medicaid,
>the gulag's big engine. We ask, Why does Medicaid law require every state
>to
>finance the gulag but make in-home services optional? Why must states ask
>Washington for a special ''waiver'' for comprehensive in-home services? Why
>not make lockup the exception? ''Our homes, not nursing homes.'' It's a
>powerful rallying cry within the movement. In the larger world, it's mostly
>unheard, poorly understood. We are still conceptualized as bundles of needs
>occupying institutional beds, a drain upon society.
>
>We know better. Integrated into communities, we ride the city bus or our
>own
>cars instead of medical transportation. We enjoy friends instead of
>recreational therapy. We get our food from supermarkets instead of
>dietitians.
>We go to work instead of to day programs. Our needs become less ''special''
>and more like the ordinary needs that are routinely met in society. In
>freedom, we can do our bit to meet the needs of others. We might prove too
>valuable to be put away.
>
>hile the movement has been collectively trying to change the world,
>individuals continue to live and die.
>
>My law-school friend Dave fell into the gulag in the end. A series of
>events
>-- a career setback, some acute medical problems, perhaps creeping
>disappointment -- made him sign into a nursing home. He vanished without
>telling his friends he was going and died within the year. My little
>brother
>Kermit remains free and is using his freedom well.
>
>Ed Roberts died in 1995, free, keyed up about digital organizing among
>other
>things. For one, he was planning to get back to Hawaii to swim with whales:
>a
>shark sighting had thwarted his previous attempt. He did manage to float
>with
>dolphins in Florida. His respirator fell into the ocean, but he always
>traveled with two.
>
>Most of my friends from Coastal Center are now placed in small group homes.
>Although they have bedrooms with doors they can close, they work in
>''special'' programs, and they still can't select their own assistants or
>decide where they live or with whom. After more than 30 years in the
>system,
>they probably can't imagine living any other way, but in a way they never
>had
>a choice. ''Placed'' remains the operative word.
>
>Thomas lives in his own apartment and works as a courier in a hospital.
>Through a waiver program, South Carolina Medicaid pays an agency to get him
>in
>and out of bed each day. To cover frequent no-shows, he paid an on-call
>aide
>out of pocket for a while, but he couldn't afford to continue. He would
>like
>to use Medicaid funds to pay his own people, but state rules haven't yet
>been
>changed to allow that. He has taken advantage of programs that have slowly
>evolved and says he hopes to stay free long enough to have genuine control
>of
>his life.
>
>Grandmother died in 1985 and avoided the gulag, thanks to Mary Neil. She
>inherited the house and lives with her family in the rural community where
>our
>family would otherwise be extinct.
>
>When Grandmother died, I thought she might leave me some money -- for
>riotous
>living or a strict account to give. She didn't, but I wasn't disappointed.
>She
>left me the silver spoons that belonged to her mother. Sometimes I wonder
>if
>my great-grandmother missed her spoons when she was locked up. More often I
>wonder how Grandmother felt when she held her lost mother's spoons and
>turned
>them over in her mouth and let her tongue mold itself to their shape.
>
>I use those spoons daily. Their flat handles are easy to grasp. Their deep
>bowls hold as much yogurt as I can swallow. For me, that smooth silver
>represents the treasure of living free. Riding in the van I bought, in a
>hand-me-down power chair I got from Kermit, I hold my freedom precious. I
>can
>no longer braid my own hair, but I remain free to keep it long, and I do.
>My
>gold bracelet was mangled in a fall a while back, but I still wear it for
>good
>luck. I still need all the luck I can get.
>
>I have prospered and know a world I once could not imagine. I sometimes
>dare
>to dream that the gulag will be gone in a generation or two. But meanwhile,
>the lost languish in the gulag. Those who die there are replaced by new
>arrivals. Powerful interests, both capital and labor, profit from our
>confinement and fight to keep things as they are. At this writing, MiCassa
>is
>stalled in committee. Again. Institutional financing remains
>nondiscretionary
>under Medicaid.
>
>It is still possible -- indeed, probable -- that before I die I will become
>separated from my silver spoons and my gold bracelet and I'll have to get
>my
>hair cut for the convenience of the people who staff whatever facility I am
>placed in.
>
>Even now, I live on the edge of the disability gulag.
>
>Hariett McBryde Johnson last wrote for the magazine about her exchanges
>with
>Peter Singer.
>

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