They look at the label, but not at me

Steven Russell

Imagine a world where people judge you not for who you are but for who they think you are. For many folk, this is what real life is like. Steven Russell reports on a campaign fighting misconception and stigma

IT'S a pity those who delight in taunting her can't be forced to sit down and read Hilda's life story. It would show she has hopes and dreams like most people. It would show she's experienced ups and downs like most people. It would also show some of her downs have been rather worse than most people's - deserving of sympathy and understanding rather than barbs born of ignorance.

It might stop people brushing past in shop doorways and sniping “Here comes the spastic. Let's get out quick before she comes in.” It might stop cruel lads jeering “You should be in hospital.” It might stop people crossing to the other side of the road when they see her coming.

Hilda's had enough of being labelled. As well as the hurtful comments from some members of the public, she's been pigeon-holed by the state. Born in East Suffolk and Ipswich Hospital in October, 1948, Hilda was taken into care the following day - apparently “because of home conditions, illiteracy and backwardness of the parents”.

Over the years officialdom has called her mentally defective, mentally sub-normal, mentally retarded, mentally handicapped, someone with learning difficulties, and a woman with learning disabilities. Some descriptions were later challenged as plain wrong.If we want to add labels of our own we might say Hilda's someone who adores dancing; someone who's long been infatuated with the music of Elvis; someone who became a wife after overcoming numerous obstacles; someone who as a playgroup volunteer was brilliant at dealing with a boy who was a handful.

She's one of the people backing the If You Only Knew campaign launched by Suffolk Mental Health Partnership NHS Trust. It aims to combat the stigma against people with mental health or substance misuse problems, or who use learning disability services.

Hilda spent much of her early life in institutions before health reform started closing them down in favour of community-based care. For the past couple of years she's lived in a two-person bungalow in one of Suffolk's larger market towns, where her sense of independence is complemented by so many hours a week of care support.

She feels finally settled after many moves over the years, but life would be better still if that ignorant minority empathised a bit more.

“I don't go out any more on my own. I used to go out quite a lot, but I got followed and called all the names under the sun. When I go into shops, I still hear people” - other customers - “say 'Watch out. Here comes the spastic.

“They even copy me if they see me out in the street. They come up behind me and start walking like me. When I stop, they stop. And when I start again, they start again. I've had it all my life.”

Her worry is that folk in similar situations will stay indoors and become isolated if they fear verbal abuse beyond the front door.

You can't help thinking that folk like Hilda deserve better.

In her second year she was diagnosed with a condition called hemiplegia. Today, Hilda has a weak left leg and little use of her left arm.

A booklet produced last year by the School of Social Work and Psychosocial Studies at the University of East Anglia, entitled A Life in the Care of the State (Am I Allowed?), describes Hilda's life.

Her own words are complemented by commentary from Carol Dawson. Details are given of the reforms over the years that influenced the kind of care Hilda received.

After time at an independent boarding school in Halstead and a foster placement at Dunwich she was 17 when, in the spring of 1966, she went to the Royal Eastern Counties Hospital in Essex. It was split across various sites; Hilda was in Essex Hall (an institution which by 1979 would have 338 beds) and Turner Village (476 beds by the same time) in Colchester.

In a 1976 letter a specialist in community medicine wrote “the tragedy is that she was ever admitted to a mental sub-normality hospital”.

Hilda was there about 11 years before being discharged in January, 1977, aged 28. She spent four years at a privately-owned residential home in Suffolk. Stowmarket Adult Training Centre was next. And then, in the spring of 1982, she and a friend moved into a house in the community, in Stowmarket, with support from staff at the centre.

After so many years in larger institutions, a high degree of independence took some getting used to. She admits: “When I first went out into Union Street I kept thinking I shouldn't be having this key; I should be giving it back. Sometimes I still think this now . . .”

In the mid-1960s Hilda had become friendly with a man called Maurice after meeting him at Turner Village. He moved to Cambridge and so it wasn't easy for them to keep in touch. Nevertheless, in the autumn of 1984 came their wedding in Stowmarket. They were the first couple using services for learning disabilities to marry in Suffolk and it went down as the happiest day of Hilda's life.

They had more than 14 years as husband and wife before Maurice contracted leukaemia.

Later in 1999 Hilda became regional representative for Suffolk, Cambridgeshire and Norfolk on Mencap's National Assembly, serving for six years. Earlier, she'd become involved with a charity called Ace - Advocacy Can Empower - working as a volunteer at its office in Stowmarket. In 2005 she became chair of the board.

Hilda's also chairman of the local Learning Disability Partnership Board, whose job is to make sure the lives of people with a learning disability get better.

Speaking of making things better, what would she say to the name-callers, if she could and ensure they were listening?

Well, when we're out, either leave us be or come and talk to us like human beings, “not like 'low-grades.' If you were like myself, and other people like myself, how would you like the mickey taken out of you? It's not right.

“We just want to be treated like everybody else.”

Julian Abbott, meanwhile, would like people to view alcoholism and other substance misuse as an addiction that brings suffering, rather than a lifestyle choice of the feckless. It's cost him jobs, driven away family and friends, and almost cost him his life.

The 37-year-old grew up in Haverhill. In his late 20s he was downing sizeable volumes of alcohol and it wasn't long before drink-induced paranoia set in. Family situations grew tricky as those who loved him tried to come to terms with this Jekyll and Hyde character.

“I realised I had a problem when it started to affect my work. I was going from job to job; geographically I was all over the place. Basically, you run away. You don't know where you've been, what you've done, you're losing jobs left, right and centre, and you never want to admit to anyone you've got this problem. You end up hiding.”

He broke down and spent six weeks being treated in West Suffolk Hospital.

Employed by a major supermarket, he'd work for three weeks, get paid, and then be off for a week, drinking and sleeping, after blowing his money on drink. He went to meetings of Narcotics Anonymous and Alcoholics Anonymous, and realised he needed more help.

Last April, Julian started a treatment programme with the Bury-based charity Focus12. He was afterwards clean for five months before relapsing. Now he's been accepted by an NHS treatment centre in Ipswich.

Happily, Julian's being supported in his recovery by both the hostel where he lives and his mother, who is “starting to understand it's an illness rather than this selfish act”.

He says: “Treatment centres you imagine to be full of these mad people. I was frightened as hell about who was going to be in there. But when you go in you've got to be clean and sober, and those you meet are the nicest people in the world.”

Stereotypes of substance abusers are simply wrong, he argues. “There's doctors, nurses, teachers - all kinds of people. The perception of an alcoholic is of this worthless person who doesn't bother with himself; but it's not the case.”

Details of the Suffolk anti-stigma campaign can be found on the website www.ifyouknew.co.uk

CAROLINE knows how hard it is to shake off labels from the past when they're glued on with ignorance and blanket judgements. A recent reminder came when she tried to get a mortgage on a flat in south Ipswich.

“The company I went to was very friendly and fine towards me until it got to the part asking about health.

“They went through the list and said 'You haven't got this, this and this . . .', kind of answering for me, and then got to the psychiatric history part. They were still ticking or crossing things out - 'You haven't got this, this and this' - and I said 'Well, actually, yes, I have got a psychiatric history.'

“From that point onwards, the whole attitude towards me changed. Before that, they were very enthusiastic about someone new taking out a mortgage; then it was 'We're not sure how this is going to work and how we're going to do it . . .'

“I believe that person who was dealing with me just didn't know enough about psychiatric illnesses.” She didn't get the mortgage, “and I probably will be stuck renting for that fact”.

It's hard to know for sure, but she suspects they thought someone with a history of psychiatric treatment wasn't a safe bet.

“It wasn't so much that they said no to the mortgage that annoyed me; it was more that I noticed how the attitude changed.”

Caroline (not her real name) grew up in Suffolk and went away to university, gaining a degree and a master's degree.

“It was when I was in my early 20s that I started to have mental health problems. I was given lots of different labels, but it seems the two I got stuck with were clinical depression and an eating disorder.”

It was when she moved back to Ipswich that she became really ill. “I continued working for about five years, then took some time out, and recently I've gone back into part-time work.

“I applied for a few jobs before the one I've got now and on application forms nowadays you can choose to put if you have a disability or not. I've never really considered myself as having a disability, because it's not a physical disability, but I decided in the end it would be best to have it out in the open.

“So I ticked the box to say 'Yes, I've got a disability' - which means that if you meet the basic criteria the job is asking for, you get an automatic interview. I'm not quite sure if that's a good thing or not. It meant at least I was getting interviews. And then, when I met people, at the end of the interview they'd want to know what the disability was and how it would affect my work; and when I mentioned any words like 'psychiatry' or 'mental health' I could tell people were not particularly impressed.” Caroline did later secure a part-time position. One of the interviewers was quite knowledgeable about mental health issues: a close friend has difficulties. “Though it may not be the reason why, they were willing to give me a chance to prove, beyond the stigma, that I am capable of working.”

The problem with mental conditions, she says, is that they're essentially invisible and most people don't understand what they are like.

“They kind of get the picture from what they've seen in the media, like films such as One Flew Over The Cuckoo's Nest - people with severe mental illness - and that's what sticks in people's minds.

“For me, I've found that the stigma of mental illness is almost like a symptom of the illness itself. Users of the mental health service are not going to be able to fully recover while there is that stigma.

“I think there needs to be a lot more education about it within society. Maybe more programme on TV and more articles about it - not so much focusing on the symptoms but what you can expect if you know someone with mental illness; and people's experiences of what it's like having it and how that's different to what society generally thinks.”