Endret: 14. juli 2011
Patricia Deegan, bakgrunn sykkel
TOUR DE MENTAL HEALTH, 2. etappe:

Patricia Deegan i den gule ledertrøya

Patricia Deegan i den gule ledertrøya

Den første uka av årets Tour de France var gigantisk for Thor Hushovd og Norge, men en katastrofe for undertegnede.

Dårligere planlegging og dårligere støtteapparat kan jeg ikke huske å ha vært utsatt for under noen av av de tidligere tourene.

Jeg vet ikke helt hvor det gikk galt, men en serie av misforståelser og uheldige omstendigheter førte til at mens Hushovd og Boasson Hagen og hele Norge veltet seg i store opplevelser og gode resultater, satt jeg i en hytte i Telemark, uten nett-tilgang og uten andre tv-kanaler enn NRK1, som i all sin statlige visdom bød på Derrick og Poirot! Hvem i all verden lengter vel etter gammel detektime og påskekrim i juli?

Men jeg kom godt i gang med en tykk roman, det er da alltids noe. Jeg returnerte til sivilisasjonen tidsnok til å få med Thor Hushovds to siste dager i gul trøye. Nå har jeg imidlertid skjønt at jeg aldri må la kona få så mye som en millimeters forsprang i ferieforberedelsene, for da er løpet kjørt.

Fra menn på sykkel til kvinner på film

Selv om Tour de France ikke har kvinner på deltakerlista, skal resten av dagens etappe handle om kvinner. Her om dagen var min kone og jeg på kino og så Bridesmaid - en utrolig morsom og søt komedie om alt som skjer i en venninnegjeng i forkant av et bryllup.

Filmen ble vist i tre saler samtidig i Kristiansand. Det var fulle saler og kjempestemning. Jeg kom til å tenke på Anja Breiens Hustruer (og de to oppfølgerne). Selv om noen vil ha det til at det at det er mannen som er det svake kjønn i dag, oppleves det fortsatt som svært befriende å se verden fra kvinneståsted.

Det var et overveldende antall unge damer i salen, men det er ingen grunn til at jentene skal få ha denne filmen for seg selv. Kvinner og menn i alle aldre bør komme seg på kino i sommer og få med seg denne livsbejaende humørsprederen.

Kvinnelige brukerstemmer på psykisk helsefeltet

På vei hjem fra kino beveget tankene seg gradvis fra det generelle kvinneperspektivet til de markerte kvinnestemmene i brukerbevegelsen på psykisk helsefeltet. Jeg ble overveldet over alle navnene som dukket opp i hodet mitt i løpet av noen minutter på sykkelsetet - her er noen av dem:

Patricia Deegan, Judy Chamberlin, Helen Glover, Monica Brun, Ingunn Øye, Arnhild Lauveng, Victoria Ibabao Edwards, Sigrun Tømmerås, Hege Orefellen, Berit Rustand, Gro Beston, Heidi Westerlund, Anne Grethe Klunderud, Ingrid Heimark, Liv Kirsti Lund, Målfrid Frahm Jensen, Siv Helen Rydheim, Gunn Helen Kristiansen, Else Marie Falch Gulbrandsen, Maja Thune, Ellen Walnum...

Kvinner som skriver bøker, artikler og dikt; kvinner som blogger og underviser; kvinner som tydeliggjør og nyanserer; kvinner som dekker et utall temaer; kvinner som tør og kan formidle sine erfaringer; kvinner som gjør erfaring til fag; kvinner som ..., ja, denne lista kan visst også gjøres uendelig. Både nasjonalt og internasjonalt har vi en rekke kvinner som har levert viktige bidrag til åpenhet og demokratisering på psykisk helsefeltet. Ja, det er nesten så en må spørre seg: Hvor er egentlig mennene?

Patricia Deegans majestetiske langspurt

Jeg skulle gjerne ha gitt mange eksempler på hva kvinnene jeg nevnte i forrige avsnitt er opptatt av. Men dere som leser dette får, i hvert fall foreløpig, nøye dere med å følge lenkene og se hva dere finner, hvis dere vil vite mer.

For jeg velger å avslutte dagens etappe med en skikkelig langspurt, eller, rettere sagt; det er Patricia Deegan som skal få kjøre solo til mål. Det gjør hun majestetisk, presist og poetisk. Hele foredraget finner du her. Foredraget og sitatene er på engelsk; hvis du sliter med å forstå teksten, får vi håpe at du har en eller flere hjelperyttere å støtte deg til.

Men det slår meg at vi må se til å få oversatt et knippe sentrale internasjonale brukertekster til norsk - dialogen med den internasjonale brukerbevegelsen er langt fra god nok.

Patricia Deegan beskriver i det første utdraget hvordan tradisjonell psykiatrisk behandling kan virke mot sin hensikt. Det å bli sett på med objektiverende blikk og å bli tatt ut av sirkulasjon kan skade både enkeltmennesket og nettverket:

For those of us who have been diagnosed with mental illness and who have lived in the sometimes desolate wastelands of mental health programs and institutions, hope is not just a nice sounding euphemism. It is a matter of life and death. We know this because, like the sea rose, we have known a very cold winter in which all hope seemed to be crushed out of us. It started for most of us in the prime of our youth. At first we could not name it. It came like a thief in the night and robbed us of our youth, our dreams, our aspirations and our futures. It came upon us like a terrifying nightmare that we could not awaken from.

And then, at a time when we most needed to be near the one's we loved, we were taken away to far off places. At the age of 14 or 17 or 22 we were told that we had a disease that had no cure. We were told to take medications that made us slur and shake, that robbed our youthful bodies of energy and made us walk stiff like zombies. We were told that if we stayed on these medications for the rest of our lives we could perhaps maintain some semblance of a life. They kept telling us that these medications were good for us and yet we could feel the high dose neuroleptics transforming us into empty vessels. We felt like will-less souls or the walking dead as the numbing indifference and drug induced apathy took hold. At such high dosages, neuroleptics radically diminished our personhood and sense of self.

As these first winds of winter settled upon us we pulled the blankets up tight around our bodies but we did not sleep. During those first few nights in the hospital we lay awake. You see, at night the lights from the houses in the community shine through the windows of the mental institution. Life still went on out there while ours crumbled all about us. Those lights seemed very, very far away. The Zulu people have a word for our phrase "far away". In Zulu "far away" means, "There where someone cries out: ‘Oh mother, I am lost" (Buber 1958, p. 18). And indeed, this is how far away it felt in the mental hospital. The road back home was not clear. And as we lay there in the darkness we were scared and could not even imagine the way out of this awful place. And when no one was looking we wept in all of that loneliness.

But when morning came we raged. We raged against the bleak prophesies that were being made for our lives. They are wrong! They are wrong! We are not crazy. We are not like those other ones over there who have been in this hospital too long. We are different. We will return home and everything will be just the same. It's just a bad dream. A temporary setback.

In time we did leave the hospital. We stood on the steps with our suitcases in hand. We had such courage - our youthful optimism waved like triumphant flags at a homecoming parade. We were going to make it. We were never going to come back to the hospital again.

Some did make it. But most of us returned home and found that nothing was the same anymore. Our friends were frightened of us or were strangely absent. They were overly careful when near us. Our families were distraught and torn by guilt. They had not slept and their eyes were still swollen from the tears they cried. And we, we were exhausted. But we were willing to try. And I swear, with all the courage we could muster we tried to return to work and to school, we tried to pick up the pieces, and we prayed for the strength and perseverance to keep trying. But it seemed that God turned a deaf ear to our prayers. The terrible distress came back and our lives were shattered once again.

Patricia Deegans forslag til strategi for å komme videre

Men Patricia Deegan nøyer seg ikke med å beskrive det som ikke virker og det som har sterke bivirkninger. I det følgende utdraget peker hun nådeløst på hvordan ”djevelen ligger i detaljene”:

We must commit ourselves to removing environmental barriers which block people's efforts towards recovery and which keep us locked in a mode of just trying to survive. For instance, I would suggest examining the following questions:

1.      Are the people we work with overmedicated? Very often the apathy, lack of motivation, and indifference we observe is an effect of neuroleptics. Are we teaching consumer/survivors about this drug effect and helping them effectively advocate for medication changes and/or reductions? The multinational drug industry is literally making a fortune through the sales of these drugs. Our priority is not to increase their quarterly profit margins. Our priority is to support people in their recovery process. It is not possible to actively participate in our own recovery process when we are in state of drug induced mental Parkinsonism, apathy and indifference.

2.      Are consumer/survivors in both community based and hospital programs involved in evaluating staff work performance? Who better knows how effective a staff person is than those receiving services from that staff person? Additionally, are we providing consumer survivors with the skills training and support to conduct such evaluations?

3.      Are program participants and hospital inpatients receiving peer skills training on how to participate in and effectively get what they want from a treatment team? Are we allowed to sit through the entire treatment planning meeting and are staff committed to speaking in plain English so we can understand the conversation? Are there peer advocates who are available to come to the treatment planning meetings with us? Are there opportunities to meet prior to the team meeting in order to strategize what we want to get out of the meeting and how to go about presenting our ideas? Is there time to role-play speaking up and dealing with questions prior to the treatment planning meeting?

4.      Are there separate toilets or eating space for staff and program participants? If there are, they should be eliminated. This is called segregation and creates second-class citizens.

5.      Who can use the phones? Who makes what decisions? Who has the real power in this program? Information is power and having access to information is empowering. What are the barriers to getting information in the program?

6.      Do we understand that people with psychiatric disabilities possess valuable knowledge and expertise as a result of their experience? Do we nurture this important human resource? Are peer run, mutual help groups available? Are we actively seeking to hire people with psychiatric disabilities and to provide the supports and accommodation they may request?

7.      Have we created environments in which it is possible for staff people to be human beings with human hearts? Do we offer supervision or staff surveillance? Perhaps we could help create more humanized work environments if we sought to view working with people as a journey in which we both move and are moved by the people we seek to serve. Perhaps we could offer our workers what Jean Vanier (1988) calls "accompaniment". Accompaniment means offering to walk with our staff as they make that sometimes painful, sometimes joyous journey of the heart we call the "direct care relationship". Directly caring. Ah! Now there's true change.

8.      Do we work in a system which rewards passivity, obedience and compliance? Is compliance seen as a desirable outcome? As a friend who is a consumer/survivor told me, "Tell those casemanagers that they have it all wrong. Tell them to stop saying that compliance is the road to independence". And indeed, compliance is not the road to independence. Learning to become self-determining is an outcome that is indicative of environments that support opportunities for recovery and empowerment.

9.      Have we embraced the concept of the "dignity of risk" and the "right to failure"? " Chronically normal people" (CNP's !), or people who have not been psychiatrically labeled, are allowed to make dumb, uninsightful decisions all the time in their lives. My favorite example is Elizabeth Taylor who just got her eighth divorce. We might say, "She lacks insight! She is failing to learn from past experience!" However, when she embarks on marriage #9, no SWAT team of nurses with Prolixin injections will descend upon her "in her best interest". But just imagine if a person with a psychiatric disability were to announce to their treatment team that they were about to get married for the 9th time! People learn, and sometimes don't learn from failures. We must be careful to distinguish between a person making (from our perspective) a dumb or self-defeating choice, and a person who is truly at risk.

10.  Are there opportunities within the mental health system for people to truly improve their lives? Are there a range of affordable, normal housing situations from which people can choose a place to live? Is there work available? A person who just recently went back to work after many years of hospitalization said to me, " What's all this talk about empowerment? I can tell you the definition of empowerment: "It's a decent paycheck at the end of the week".

Patricia Deegan har definitivt kraft i tråkket. Dette var sterke saker. Her er det mye å tygge på. Kvinner kan, også når det kommer til å definere aktiviteten på psykisk helsefeltet.

Den enkelte får bruke dette som best hun / han kan i sitt daglige virke. Det første jeg for egen del tenker i møte med dette er at her er det i hvert fall mye jeg kan og må bruke når jeg underviser.

Jeg tror sannelig Patricia Deegan kan ikle seg den gule ledertrøya etter dagens etappe. Sammen med Hege Orefellen er hun er for øyeblikket min favoritt til å vinne hele Tour de Mental Health 2011.

Men som de sier på TV2: -Se hva som skjer!


 

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