The DisabilityGulag
By HARRIETMcBRYDEJOHNSON
"My father died when I was 2, andI lost my mother when I was 5." Throughoutmy
childhood,that's what Grandmothersays. She'sa fine storytellerwith rare gifts for
grossdelicacyand folksy pomposity,but she doesn'tgive the details,and we don't
ask. To me, it's enough knowingthat she'san orphan,like Heidi-- like Tarzaneven!
What elseis worth knowing?
Eventuallyour cousinstell us. WhenGrandmotherwas 5, her motherdidn't die. She
was placedin an asylum.Thereshe lived until Grandmotherwas in her 20's.There
s h ed i e d .
The news seemsto answer some questionsabout Grandmother.Why does an
independent
thinker set suchstore on conventionalbehavior?Why did she marry a
ridiculously
steadyPresbyterian?
I think it's fear. Fear that one day somethingwill go wrong and she, too, will be
taken from her family, snatchedfrom the placeshe has made in the world, robbedof
her carefullyconstructedself and lockedup for life.
I know that fear. I share it.
Grandmotherlost her mother in the early 1900'sto what was consideredprogressive
policy.To protect society from the insane,feeblemindedand physicallydefective,
states investedenormous publiccapitalin institutions,often scatteredin remote
areas.Into this state-createddisabilitygulag peopledisappeared,
one by one.
Today, more than 1.7 million mothersand fathers, daughtersand sons, are lost in
America'sdisabilitygulag.Today'sgulagcharacterizes
isolationand controlas care
and protection,and the disappearances
are often calledvoluntaryplacements.
However,you don't vanish becausethat's what you want or need.You vanish
becausethat's what the state offers,You make your choicefrom an array of one.
I
It
:i,i
But now the gulag facesa challengefrom peoplewho know the fear firsthand.
Jrt'st978. Just out of college,I'm workingfor a localdisabilityrights organization.I'm
riding,and also in my small way powering,a new wave, a shift from care and
protectionto rights and equalityfor peoplewith disabilities.Partof my job is to give
technicalassistanceon the new Section504 regulations,which ban disability
d i s c r i m i n a t i ownh e r et h e f e d e r a d
l o l l a rg o e s .T h i s g i g h a s m e s q u i r m y .I ' m c o n s u l t i n g
with CoastalCenter,a state institutionhousingpeoplewith developmental
disabilities
-- primarilycognitiveimpairmentsand some severephysicaldisabilities-- about 20
milesfrom my home in Charleston,
S.C.
My paycheckwon't supporta lift-equippedvan, so I go by car. I am transferredto
my portablewheelchairand rolledinto a room full of functionaries.How to establish
an authoritativepresence?I'm youngand small and disabledand female.I seem to
get away with the female part, but the rest is tough.
Still, onceI get going I start to think I can talk circlesaroundthe very best
l;5
The Disability Gulag - H.B. Iohnson
functionaries.
In no time, it's almostnoon. We're breakingup.
The moment has come. "I have some old schoolfriendsin cottage D-4;,I say.
"CouldI possiblyhave lunchwith them?',
There'ssome surprisedhemmingand hawing,but, yes, certainly,if I like. An
administrativeassistantis taskedto push me there.
The "cottage" is a big rectanglein cement blocks and brick veneer. One side houses
boys -- adult "boys" -- and the other is for "girls."
My pusherleavesme in the centralday room, parkedagainsta wall. It seemsboth
chaoticand lifeless.Highon a wall, a TV blares,watchedby no one. Ambulatory
residentsmove acrossthe floor with no apparent purpose.Along the walls,
wheelchairpeopleare lined up, obviouslystuck wherethey'replaced-- where we're
placed,I shouldsay, becauseI, too, am parked againsta wall, unableto move -like knickknackson a shelf.
Six of these knickknacksare my old friends. Their eyes are happy to see me. Their
bodiesare beyondhappy: wild, out of control.cerebralpalsydoesthat. I make
myselfgrin.
My pal Thomas is a cool customer.He looks straight at me, then cuts a rueful look at
the others spazzingout. 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.Platesare put in front of us, with measuredfood in
bite-sizepieces.I'd like butter and salt, water insteadof milk, but this isn,t a
restaurant.Thomasis parkedbesideme, and we chat aboutold times at our special
crip school.We talk politics,as we did as kids.
Somestaff memberssit and feed residents.Otherscomeand go. They talk loudlyto
one another,and we tune them out. Then a woman'svoicepenetratesmy skull,
reachesmy brain. "Is this the new girl from WhittenCenter?"
I'm awarethat the state'soldestinstitutionis trying to reducecrowding.I look
aroundfor the new girl from WhittenCenter.
She asks again, "Is this the new girl from Whitten Center?"
I realizethat she meansme.
I know it's irrational,but I want to scream.I can't, becausethey don't like screaming
here, and in this panicI don't know what to do if I can,tscream.
My friends,amused,grimaceand writhe. Pleasedon't start laughing,I want to say.
Don't go all spazzyl
"Is this the new girl from Whitten Center?,'
Thomasanswers."she's our friend.she's from outside."He has come to my
defense!
2
The Disability Gulag - H.B. Johnson
The loudmouthedstaff membersdon't hear. "Who is this girl?,'
"She's frorn outside."
"Did you say from outside?"
Thomascoughs."Lookat her hair."
The aide studiesthe shiny braid that falls to my knees. She remarks on my pretty
dressand my real gold banglebracelet.Obviouslyfrom outside.Speakingto me
now, she askssimplequestions,I manageto explainhow I know these people,
where I live, what I do. The staff membersare amazedthat someonewith suchhigh
care needswent to college,has a job, livesoutside.All agreethat I'm highfunctioning, mentally.
Time to go home,but first I have to use the bathroom.Why did I sip that coffeein
the conferenceroom?Oh, well. At leastthis placehas beds and bedpansand aides
who handlethem regularly.I ask for help.
Aides scurry about to improvisea screen. "I'm sorry there's no privacy; we'rejust
not set up for visitorsto use bedpans."
what about residents?Is prlvacy only for visitors with gold bracelets?
I can't ask; I'm begginga favor. In front of my friends,I can't demandspecial
treatment.If they routinelyshow their nakednessand what falls into their bedpans,
then I will, too. Despitemy degreeand job and long hair, I'm still one of them. I'm a
crip. A bedpancrip.And for a bedpancrip in this place,private urinationis not
somethingwe havea right to expect.I say it's O.K.
It's a two-personjob the way they do it. My way is quickerand easier,but they get
their instructionsfrom their bosses,not from the peoplethey help. They try to hide
me with sheets.
That evening,I tell my family the funny story about how I was mistakenfor the new
girl from WhittenCenterand how Thomasand 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 comesfrom a differentexperience,but I'm convincedthat my fear is the same
fear Grandmotherknew.Becauseof a neuromuscular
disease,I have neverwalked,
dressed,bathedor done much of anythingon my own. Therefore,I am categorized
as needingspecialtreatmentand care.
To Grandmother,
that meant extra concern,specialpleasurewhen things went well,
tangiblehelp at times. Mostsummers,she kept me at her housefor a week or so
with my cousinMaryNeil.The widow of a prosperoussmall-townpharmacyowner,
Grandmotherlet us roam the town with whicheverteenagershe had hiredto help.
Anyonecoulddo the job, becauseI explainedeverythingstep by step; Mary Neil
learnedthe drill,too. Freeof hands-onduties,Grandmotherentertainedherselfand
us with her inexhaustible
store of memorizedpoetry, quoted inappropriately.
Squeezinginto an old-fashioned
girdle,she would say, "What strangeprovidence
hath shapedour ends?"or "Oh, that this too too solid flesh would melt." Copingwith
3
:,,i
.:.:;t
The Disability Gulag - H.B. Johnson
my specialneedswasn't all that onerous.
To the larger world, my needshad seriousimplications.I couldn't go to schoolor to
camp with my brothersand sister.I was exiledto "special"places,As my peer group
enteredadolescence,
the gulag swallowedabout half of my classmates.Fourwent in
1969.They "graduated"into an institutionafter a ceremonywith capsand gowns
and tears.Others,includingThomas,just didn't come back after summervacation.
My friends' parents, asking the state for help, were persuadedto placethem where
they wouldget the specialized
carethey supposedlyneeded.
In fact, until they disappeared,my friendsgot their care from peoplewith no formal
training.The main differencebetweenthem and me was economic.My family could
affordhiredhelp.Thus insulated,they didn't go to the state, and the state didn't tell
them it puts peoplelike me away.
I k n e w m y f a m i l yw a s n ' tl i k e F . D . R . ' o
s r H e l e nK e l l e r ' st;h e y d i d n ' th a v et h e m e a n s
to set me up for life. I was more like one of my girlfriends,who had lived with nice
parentsin a nice housewith a nicehired lady to take her to the park to meet me and
my lady -- until somethingwent wrongand she disappearedinto CoastalCenter.
Whenevermy parents scrambledto pay for something unexpected,a part of me saw
my freedomhangingin the balance.I learnedearly that privilegedoesn'talways
last.
The nondisabledworld sees powerlessness
as the natural product of dependenceand
dependence
as the naturalproductof our needs.However,for nondisabledpeople,
needsare met routinelywithout restrictingyour freedom.In the gulag,you have no
power.The gulag swallowsyour money,separatesyou from your friends,makesyou
fearful, robs you of your capacityto say -- or even know -- what you want.
The day I visitedCoastalCenter,I was beginningan interestingcareerand should
havefelt that the world was all beforeme. Instead,worriesnaggedme. What if
there isn't enoughmoney?What if family can't take care of me?
Backthen, my best hope was to die young. My disabilitywould progressuntil I
neededa ventilator.Then, near the end of my life, I figured,I'd slide into my slot in
the gulag.
flll it takes to teach me how wrong I have been is about 45 secondsin the companyof
a man namedEd Roberts.It's 1979. He'sspeakingin Arlington,Va.
In the smallworld of disabilityrights,he is a star with a famousstory. He is
paralyzedfrom the neck down as a resultof childhoodpolio.In his youth, he was
deniedservicesby California'sDepartmentof Rehabilitation
for beingtoo disabledto
work. A decadeand a half later, he becamehead of the department.In between,he
fought his way into the Universityof Californiaat Berkeleyand, with other severely
disabledactivists,helpedset in motionthe disabilityrights movement,which is now
challenging
the gulag'sright to exist.It is pushingfor a shift away from public
financingfor institutionalization
and to publicfinancingfor personalassistance,
controlledby us. The governmentshouldpay for the help we need,and it shouldnot
force us to give up our freedomas the quid pro quo.
Neverwas a big star more frail. Physically,
his power chair overwhelmshim. And
gets
there'smore. He
each breathfrom a machine;his speechfollowsthe rhythmsof
4
The Disability Gulag - H.B. Johnson
the ventilatorwhoosh.With each whoosh,he is changingmy worldview.
It's not what he has done.Not what he is saying.Not who he is. It's his presence.
Whoosh,His bad-boydelightin truth-telling.Whoosh.His hellcatgusto for proving
the world wrong. Whoosh.
He is decrepitand tough and amazinglyfunny. He is a big state agencyhead unlike
any the world has ever seen.
In lessthan a minute, Ed showsme that I have beenwrongabout peoplewith vents,
just as the nondisabledworld has beenwrong about me. Whoosh.
A life like his can turn a life like mine upsidedown. Whoosh.And lives like ours can
turn the world upsidedown -- or maybeset it right side up. Whoosh.
It's 1984. I'm living in Columbia,S.C., 100 milesfrom my family,taking advantageof
new possibilities.
Until the Section504 regulations,disabilitydiscriminationby
universitieswas routineand unapologetic.Now, at the Universityof South Carolina
law school,I am one of six wheelchairusers.Fiveof us use powerchairs;without
someone'shelp, we can't get out of bed. As schoolmatesstrut in power suits, we
whir aroundwith book bags hangingfrom our push handlesand make bottlenecksat
the elevators.I think of us as a counterculture
that challenges
the get-aheadMe
Decade.Most people,when they think about us, operateunderthe delusionthat
we're inspirations.
Betweenclasses,I catchup with Dave,a classmatewho is quadriplegicas a resultof
spinalcord injury. There'sa good movie at the studentuniontonight. Let'sgo. O.K.,
and a burger before.Fine.A plan.
.
Nearly.Firstwe repairto adjoiningpay phonesto reschedule
our afternoons.Eachof
us grabsa passingstudentto dial. Busysignal.Try this number.No answer.Try that
first number again. Hey,can you do 4 insteadof 5? Thenanothercall. No answer.
Try this one.
My studentdialer has to run. Anothertakes his place.
Hey, I'm going out. Canwe do 10 insteadof 9? Do you knowwhere so-and-sois? Hi.
Can you unpackmy booksat 3?
Betweenus, it takes about a dozencalls.
"Dave," I say, "this is some crazyway to live, ain't it?"
He gives his diffidentC-studentshrug, "Yeah.When I was injured,I didn't want to
live this way. They said I'd adjust, but I wantedto die. Well,you know, the guy I
was then, he got what he wanted. He died. I'm a differentguy now."
It's a complicatedlife, to schedulein advanceeach bathroomtrip, each bath, each
bedtime,each layingout of our food and big law books,eachgetting in and out of
our chairs.But it can be done.We're doing it. We can do what we want. No needto
get anyone'spermission.No needto have it documentedin any nursingplan or
loggedonto any chart. No one can tell us no.
5
The Disability Gulag - H.B. Johnson
We can meet for a burgerand a movie if we want.
Every so often, there are efforts to try somethingdifferent for young disabled
people.When Daveand I were in law school,thJ universitygot one dormitory
licensedas a carefacility.Medically,I qualifiedfor placementthere, and the promise
of around-the-clock
aidessoundedappealingwhen I had never lived away from
home. Financially,
I was too rich for Medicaidand way too poor for the self-payrate.
Dave had Medicaid,but his life had alreadytaught him the value of freedom.The
studentsin the on-campusnursinghome helpedme learnthe same lesson.Even
with a good staff and decentconditions,they were robbedof basic choices.The staff
memberswere controlledby the facility,not by the studentswho lived there.
I relied mainlyon resourcesavailableto any student.Becauseof Section504, I had
accessto student housing,transportationand cafeteriaservice.A small grant from a
disabilityagency,a studentloan,work study, summerearningsand a stiom
ThurmondScholarship,
of all things,coveredthe usualcostsof law school,plusthree
and a half hoursof help per day from studentworkersI selected.SometimesI
kickedin a bit extra on the rent to get an especiallyhelpfulroommate.It's true that
I dependedon the kindnessof strangersand friendsand sometimeswonderedhow I
would hold it together.But alwaysthere was some lucky break.
Sometimesthe break was a checkfrom Grandmotherwith a note, "Be prepareda
strict accountto give." Or, "squanderin riotousliving." Eitherway, she showedthat
she still rejoicedin my successand also worriedabout me.
By this time, she alsoworriedabout her own placeon the edge of the gulag.As age
brought disabilities,
she got my cousinMary Neilto move in. Grandmofnernao
enough moneyto see her through,but not if it had to purchaselots of long-term
care. The state'sonly solutionwas to make her poor and then foot the big bill for
lockup in a nursinghome.
The nursinghome is the gulag'sface for peoplelike Dave,me and Grandmother.
That is wherethe imperativesof Medicaidfinancingdrive us, sometimesfacilitated
by hospitaldischargeplanners,"continuumof care" contractsor social-service
workerswhosejob is to "protectvulnerableadults."Pushedby other financing
mechanisms,peoplewith cognitivedisabilitiesland in "state schools,"and the
psychiatrically
uncuredand chronicare Ping-Ponged
in and out of hospitatsor mired
in board-and-care
homes.For all these groups,the disabilityrights critiqueidentified
a commonstructurethat needlesslystealsaway libertyas the price of care.
In 1984, the generalthinkingcouldn'tgo beyondnicer,smailer,"homier"
institutions.With my experienceas a high-maintenance,
low-budgetcrip surviving
outsidethe gulag,I offeredmyselfin localmeetings,hearingsand informal
discussionsas an independentliving postergirl. I explainedthat certainstates,like
New York, Massachusetts,
coloradoand california,offer in-home services.
But, peoplesaid,SouthCarolinais a conservativestate.
I talked up the need for comprehensivecivil rights legislation.Extend Section504's
principlesto all levelsof governmentand the privatesector.
It'll neverhappen,peoplesaid.The civil rightsera has passed.
6
The Disability Gulag - H.B. Johnson
We got civil rights legislation-- the AmericansWith Disabilities
Act -- in 1990.It's a
fluke, peoplesaid.It won't be enforced.
In 1995, the United States Court of Appealsfor the Third Circuit ruledthat the A.D.A.
banssegregation.Needlessisolationof peoplewith disabilitiesin institutionsis
segregation.
That'sa liberalcircuit,peoplesaid.The SupremeCourtwill reverse.
In 1999,the SupremeCourt, in Olmsteadv. L.C.,affirmedthat needlessinstitutional
confinementviolatesthe A.D.A. Fine,but it's just words on paper,peoplesaid.The
financingstill drivesus into institutions.
That'svery true. But the movement has been treating Olmsteadrights as if they're
real, usingthe court'slegitimacyto demanda wide variety of programs,like in-home
care,on-calland backuphelp, phonemonitoring,noninstitutional
housingoptions,
independent-living-skills
trainingand assistivetechnology.We'realsogoingafter red
tape, legalrestrictionsand the mind-setthat saysthat if you need help,you need
professional
supervision.
the springof 2O02.I'm testifying beforea subcommitteeof the South Carolina
-/t's
StateSenate.Besideme is my friend Kermit.
Kermitcallsme his big sister in disability.In fact, he's downrightmassiveand a
generationolderthan I am, but I'm his seniorbecausehe becamea quadtwo years
after I was born into disability.
The blackbatterybox on his chair spoftstwo stickers.The shockingpink one is from
Mouth,a radicaldisabilitymagazine,It says,"Too sexy for a nursinghome.""It's
true, you know," Kermitoften explains."I did sevenyears inside.In so long,I felt
weirdwhen someonetook me out, like I didn't belong.But I was too sexyto stay. I
took up with one of the aidesand marriedmy way to freedom."That marriageended
yearsago, and Kermit no longerhas family help, but he will nevergo back.His other
sticker,plainwhite, says, "Yes 977." He had them printedtoday. They'reaboutthe
bill we'rehere for.
Senate Bill g77 would amend state law to exclude"self-directedattendantseryices"
from the legaldefinitionof nursing.Currentlaw presumesthat all hands-onphysical
care,for pay, is the practiceof nursingand must be providedby or supervisedby
licensedpersonnel.The nursingprofessionhasjurisdictionover our bodiesand
decideswhen to delegateauthority.Thosewho handleus are supposedto get their
instructions
from a written nursingplan, not from us.
The law hasn't been enforcedagainstself-pay crips like Kermit and me, but federal
law requiresMedicaidand Medicareto abide by the state nursinglaw. That means
that their beneficiaries
must acceptwhatevercomesfrom a licensedagency.
Agenciestypicallycan't cover Christmasmorning,late nightsout or many bathroom
trips spreadout over the day. Becausethe easiestplaceto get nursingis in a
nursingfacility,this law becomesanotherpath into the gulag.
Kermitand I know what works.Throughinformalnetworks,we find peopleto do
what we need.Becausewe are the onesdoing the delegating,we are free. Kermit
usedhis freedomfor a civil servicecareer;today he uses$20,000per year of his
retirementsavingsto pay for that freedom,about half of South Carolina's
Medicaid
nursinghome rate. With family backup,I get by with the irregularincomeof a solo
7
The Disability Gulag - H.B. Johnson
law practice,stashingmoneyin goodyearsto cover bad ones.Our bill would legalize
the way we live. It would also removea legalbarrierso that we can agitatefor South
CarolinaMedicaidto financeself-directed
servicesand make real choicespossible.
The subcommitteeis botheredabout safety. The administratorfor the Board of
Nursingarguesthat complications
like pressuresoresand infectionscan be fatal.
Nursingsupervisionis needed,she says,to recognizethe dangersigns.
I wish Kermit were testifying. He has been self-directingvery complicatedstuff, and
he endures,more than 40 yearsafter his accident.He also has a great physical
persona.His stillnesscommunicates
rock-solidstrength.His whiteness-- a result of
-avoidingColumbia'skillingsun is not so much paleas gleaming.But he doesn't
like publicspeaking.He is happiestfindingpeoplein nursinghomeswith dreamsof
freedom,helpingthem makethe break.It's undergroundrailroadwork, and I'm
ashamedto say it's not for me. I still panicwhen I go into those places.Let me talk
to the functionaries.
So I explain our reality to the senators.We learn to recognizeour danger signs. We
care about our own safety. We can decidewhen to consulta professional,as
nondisabledpeopledo,
And, incidentally-- bad things have been known to happeneven when a nursingplan
is in place.
Inevitably,the senatorslookfor a middleground.What if we allow self-directionfor
"routine"procedureslike bathingand dressing,but retain nursingcontrolover
"nonroutine"procedureslike vent care and catheters?
Kermit'scraggy face falls. They'retalking about fixing the law for me, but not for him
-- or for Ed Robefts,who livedon a ventilator,or future me.
I have been advisedto sidestepthe gory stuff, but here we go. "Senator, if you need
a urinary catheter insefted every time you need to go, say three to six times per
day, that becomesa routineprocedure-- for you."
I sit so low, I can see, undertheir table, all of the senatorscrossingtheir legs. I have
their attention.
They question me about proceduresinvolvingtubes, needles,rubber-glovedfingers,
orificesnaturaland man-made.I won't flinch.Nevermind that Grandmotherwould
considerall of this indelicate."We know how to do them. And all these procedures
''
are commonlydone by unpaidfamily members.That'sentirelylegal,and the nurses
qualifications.
don't mind. The nursinglaw isn't aboutsafetyand professional
It's
a b o u tw h o c a n g e t p a i d . "
One senatoris a fundamentalist-Christian
Republican,
the kind who saysthat the
anti-sodomylaws shouldbe strengthened
and enforced."Ms. Johnson,you've
explainedwhy this bill won't put peopleat greater risk, but I don't understandwhy
you care enoughto travel from Charlestonto push for it.
"Two reasons,Senator.One is, changingthe law will free up resourcesto meet
needsthat aren't being met now. With this change,we can push third-partypayers
like Medicaidto fund more options,make the moneygo further. Homecare in the
B
The Disability Gulag - H.B. Johnson
aggregatecostslessthan lockingpeopleup.
"The other is simpler.I want the legal right to say who comesin my bedroomand
who sees me naked-- sameas you do, Senator!"
Rednessrisesfrom the senator'stie and washesup his face.Oncewe have him
blushing,the othersfall in line.The favorablevote is unanimous.
We roll outside.My teal minivanis parkednear Kermit's"FreedomVan" -- a white
vehiclewith controlshe can operatewith his limp fingersin metal splints.
Kermit stops."You donegood,girlie."
No one but Kermitgets to call me girlie. I sometimescall him Mount Rushmore.
our bill becamelaw on July 1, 2oo2, in time for Independence
Day. self-pay people
won the right to controlour bodies,but getting publicfinanciersto allow the same
flexibilityis a continuingstruggle.
Ultimately,savingourselvesfrom the gulag will take more than redefinition.It also
takes money for in-homeservices.But in a sense,we're spendingthe money now -$20,000to $100,000per personper year, dependingon the state -- for institutional
lockup, the most expensiveand least efficient servicealternative.
For decades,our movementhas been pushingfederallegislation,currentlyknownas
MiCassa,the MedicaidCommunityAssistanceServicesand SupportsAct, to correct
t h e i n s t i t u t i o n abl i a si n p u b l i cf i n a n c i n ge, s p e c i a l l M
y e d i c a i dt ,h e g u l a g ' sb i g e n g i n e .
We ask, Why does Medicaidlaw requireevery state to financethe gulag but make inhome servicesoptional?Why must statesask Washingtonfor a special"waiver" for
comprehensivein-homeservices?
Why not make lockupthe exception?"Our homes,
not nursinghomes."It's a powerfulrallyingcry withinthe movement.In the larger
world, it's mostly unheard,poorlyunderstood.We are still conceptualized
as bundles
of needsoccupyinginstitutionalbeds,a drain upon society.
We know better. Integratedinto communities,we ride the city bus or our own cars
insteadof medicaltransportation.
We enjoy friendsinsteadof recreationaltherapy.
We get our food from supermarkets
insteadof dietitians.We go to work insteadof to
day programs.Our needsbecomeless "special"and more like the ordinary needs
that are routinelymet in society.In freedom,we can do our bit to meet the needsof
others.We might provetoo valuableto be put away.
Dhile the movementhas beencollectivelytrying to changethe world, individuals
c o n t i n u et o l i v ea n d d i e .
My law-schoolfriendDavefell into the gulag in the end. A seriesof events -- a
careersetback,some acutemedicalproblems,perhapscreepingdisappointment-m a d e h i m s i g n i n t o a n u r s i n gh o m e .H e v a n i s h e dw i t h o u tt e l l i n gh i s f r i e n d sh e w a s
going and died within the year. My little brother Kermitremainsfree and is usinghis
f r e e d o mw e l l .
Ed Robertsdied in 1995,free, keyedup about digitalorganizingamong other things.
F o r o n e , h e w a s p l a n n i n gt o g e t b a c kt o H a w a i ti o s w i m w i t h w h a l e s :a s h a r ks i g h t i n g
had thwafted his previousattempt.He did manageto float with dolphinsin Florida.
9
The Disability Gulag - H.B. Johnson
.
His respiratorfell into the ocean,but he alwaystraveledwith two.
Most of my friendsfrom CoastalCenter are now placedin small group homes.
Althoughthey have bedroomswith doorsthey can close,they work in "special"
programs,and they still can't selecttheir own assistantsor decidewherethey live or
with whom. After more than 30 years in the system,they probablycan't imagine
living any otherway, but in a way they never had a choice."Placed"remainsthe
operativeword.
Thomaslivesin his own apaftmentand works as a courierin a hospital.Througha
waiver program,SouthCarolinaMedicaidpaysan agencyto get him in and out of
bed each day. To coverfrequentno-shows,he paid an on-callaide out of pocketfor
a while, but he couldn'taffordto continue.He would like to use Medicaidfundsto
pay his own people,but state rules haven'tyet been changedto allow that. He has
taken advantageof programsthat have slowlyevolvedand says he hopesto stay
free long enoughto have genuinecontrolof his life.
Grandmotherdied in 1985 and avoidedthe gulag,thanksto Mary Neil,She inherited
the houseand liveswith her family in the rural communitywhere our familywould
otherwisebe extinct.
When Grandmotherdied, I thought she might leaveme some money -- for riotous
living or a strictaccountto give. She didn't, but I wasn't disappointed.She left me
the silverspoonsthat belongedto her mother.SometimesI wonder if my greatgrandmothermissedher spoonswhen she was lockedup. Moreoften I wonderhow
Grandmotherfelt when she held her lost mother'sspoonsand turned them over in
her mouth and let her tongue mold itselfto their shape.
I use thosespoonsdaily.Their flat handlesare easyto grasp.Their deep bowlshold
as much yogurtas I can swallow.For me, that smoothsilver representsthe treasure
of livingfree. Ridingin the van I bought,in a hand-me-downpower chair I got from
Kermit,I hold my freedomprecious.I can no longerbraid my own hair, but I remain
free to keep it long,and i do. My gold braceletwas mangledin a fall a while back,
but I still wear it for good luck. I still needall the luck I can get.
I have prosperedand know a world I once could not imagine.I sometimesdareto
dream that the gulagwill be gone in a generationor two. But meanwhile,the lost
languishin the gulag.Thosewho die there are replacedby new arrivals.Powerful
interests,both capitaland labor, profit from our confinementand fight to keepthings
as they are. At this writing, MiCassais stalledin committee.Again.Institutional
financingremainsnondiscretionary
under Medicaid.
It is still possible-- indeed,probable-- that before I die I will becomeseparated
from my silverspoonsand my gold braceletand I'll have to get my hair cut for the
convenience
of the peoplewho staff whateverfacilityI am placedin.
Even now, I live on the edge of the disabilitygulag.
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