The Disability-Research Discussion List

Managed by the Centre for Disability Studies at the University of Leeds

Help for DISABILITY-RESEARCH Archives


DISABILITY-RESEARCH Archives

DISABILITY-RESEARCH Archives


DISABILITY-RESEARCH@JISCMAIL.AC.UK


View:

Message:

[

First

|

Previous

|

Next

|

Last

]

By Topic:

[

First

|

Previous

|

Next

|

Last

]

By Author:

[

First

|

Previous

|

Next

|

Last

]

Font:

Proportional Font

LISTSERV Archives

LISTSERV Archives

DISABILITY-RESEARCH Home

DISABILITY-RESEARCH Home

DISABILITY-RESEARCH  November 2003

DISABILITY-RESEARCH November 2003

Options

Subscribe or Unsubscribe

Subscribe or Unsubscribe

Log In

Log In

Get Password

Get Password

Subject:

Disability Gulag-New York Times article

From:

LILITH Finkler <[log in to unmask]>

Reply-To:

LILITH Finkler <[log in to unmask]>

Date:

Sun, 23 Nov 2003 22:11:19 +0000

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (742 lines)

>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.
>

_________________________________________________________________
The new MSN 8: smart spam protection and 2 months FREE*
http://join.msn.com/?page=features/junkmail
http://join.msn.com/?page=dept/bcomm&pgmarket=en-ca&RU=http%3a%2f%2fjoin.msn.com%2f%3fpage%3dmisc%2fspecialoffers%26pgmarket%3den-ca

________________End of message______________________

Archives and tools for the Disability-Research Discussion List
are now located at:

www.jiscmail.ac.uk/lists/disability-research.html

You can JOIN or LEAVE the list from this web page.

Top of Message | Previous Page | Permalink

JiscMail Tools


RSS Feeds and Sharing


Advanced Options


Archives

March 2024
February 2024
January 2024
December 2023
November 2023
October 2023
September 2023
August 2023
July 2023
June 2023
May 2023
April 2023
March 2023
February 2023
January 2023
December 2022
November 2022
October 2022
September 2022
August 2022
July 2022
June 2022
May 2022
April 2022
March 2022
February 2022
January 2022
December 2021
November 2021
October 2021
September 2021
August 2021
July 2021
June 2021
May 2021
April 2021
March 2021
February 2021
January 2021
December 2020
November 2020
October 2020
September 2020
August 2020
July 2020
June 2020
May 2020
April 2020
March 2020
February 2020
January 2020
December 2019
November 2019
October 2019
September 2019
August 2019
July 2019
June 2019
May 2019
April 2019
March 2019
February 2019
January 2019
December 2018
November 2018
October 2018
September 2018
August 2018
July 2018
June 2018
May 2018
April 2018
March 2018
February 2018
January 2018
December 2017
November 2017
October 2017
September 2017
August 2017
July 2017
June 2017
May 2017
April 2017
March 2017
February 2017
January 2017
December 2016
November 2016
October 2016
September 2016
August 2016
July 2016
June 2016
May 2016
April 2016
March 2016
February 2016
January 2016
December 2015
November 2015
October 2015
September 2015
August 2015
July 2015
June 2015
May 2015
April 2015
March 2015
February 2015
January 2015
December 2014
November 2014
October 2014
September 2014
August 2014
July 2014
June 2014
May 2014
April 2014
March 2014
February 2014
January 2014
December 2013
November 2013
October 2013
September 2013
August 2013
July 2013
June 2013
May 2013
April 2013
March 2013
February 2013
January 2013
December 2012
November 2012
October 2012
September 2012
August 2012
July 2012
June 2012
May 2012
April 2012
March 2012
February 2012
January 2012
December 2011
November 2011
October 2011
September 2011
August 2011
July 2011
June 2011
May 2011
April 2011
March 2011
February 2011
January 2011
December 2010
November 2010
October 2010
September 2010
August 2010
July 2010
June 2010
May 2010
April 2010
March 2010
February 2010
January 2010
December 2009
November 2009
October 2009
September 2009
August 2009
July 2009
June 2009
May 2009
April 2009
March 2009
February 2009
January 2009
December 2008
November 2008
October 2008
September 2008
August 2008
July 2008
June 2008
May 2008
April 2008
March 2008
February 2008
January 2008
December 2007
November 2007
October 2007
September 2007
August 2007
July 2007
June 2007
May 2007
April 2007
March 2007
February 2007
January 2007
December 2006
November 2006
October 2006
September 2006
August 2006
July 2006
June 2006
May 2006
April 2006
March 2006
February 2006
January 2006
December 2005
November 2005
October 2005
September 2005
August 2005
July 2005
June 2005
May 2005
April 2005
March 2005
February 2005
January 2005
December 2004
November 2004
October 2004
September 2004
August 2004
July 2004
June 2004
May 2004
April 2004
March 2004
February 2004
January 2004
December 2003
November 2003
October 2003
September 2003
August 2003
July 2003
June 2003
May 2003
April 2003
March 2003
February 2003
January 2003
December 2002
November 2002
October 2002
September 2002
August 2002
July 2002
June 2002
May 2002
April 2002
March 2002
February 2002
January 2002
December 2001
November 2001
October 2001
September 2001
August 2001
July 2001
June 2001
May 2001
April 2001
March 2001
February 2001
January 2001
December 2000
November 2000
October 2000
September 2000
August 2000
July 2000
June 2000
May 2000
April 2000
March 2000
February 2000
January 2000
December 1999
November 1999
October 1999
September 1999
August 1999
July 1999
June 1999
May 1999
April 1999
March 1999
February 1999
January 1999
December 1998
November 1998
October 1998
September 1998


JiscMail is a Jisc service.

View our service policies at https://www.jiscmail.ac.uk/policyandsecurity/ and Jisc's privacy policy at https://www.jisc.ac.uk/website/privacy-notice

For help and support help@jisc.ac.uk

Secured by F-Secure Anti-Virus CataList Email List Search Powered by the LISTSERV Email List Manager