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Stigma and discrimination

Real story: John and Katie

Name-calling, aggression and physical attacks. Katie and John Cresswell-Plant have suffered all of these. The couple, who live in a suburban flat in the West Midlands, are both carers – but for each other.

Katie clearly has disabilities because she uses a wheelchair. She was born with spina bifida, hydrocephalus, kidney disease and many other conditions. John looks after the household domestic arrangements and Katie's physical practical care.

John's conditions are less obvious. He has clinical depression and clinical anxiety and is one of few people in the country who are clinically paranoid. He also has a rare functional form Asperger’s syndrome and – as yet undiagnosed – non-epileptic seizures.

Katie needs to be on hand to keep John safe in unfamiliar situations and because of the seizures, which have caused him to fall dangerously when crossing the road.

Friends and foes

The couple, who married nine years ago, share a love of classic British comedy, Assam tea and Marmite, but John's Asperger’s syndrome means that he can't go to the bingo sessions that Katie loves. Katie says she has friends at bingo – everyone is on first-name terms and can share a joke. But in the outside world, she says the couple have suffered daily, hurtful name-calling, including “retard”.

“I’d like people to start being nice to us and take us seriously. They think we’re a joke. We have feelings too. Being called names is not very nice,” Katie says.

Popular culture has played its part in some of the abuse they've received. Some people have compared them to the characters Lou and Andy from Little Britain. This has annoyed Katie so much that she wants to challenge Matt Lucas, the comedian who plays the wheelchair-using (but actually able-bodied) Andy, to a wheelchair race. John is isn't flattered by the comparison either. He suggests that it reflects the stereotype that carers are simple-minded and economically unproductive.

Problem attitudes

Most of the verbal abuse the couple receive comes from children, but the couple say that the parents encourage them. Kids have also pelted them with snowballs. Though this sounds like harmless fun, a snowball hit Katie in the face last winter, leaving her with a black eye, which frequently gives her pain.

The pair have felt further stigma from authorities, which fail to tackle their problems satisfactorily. John says that although they've referred matters to the police, it appears that they tend to get passed on to other organisations. The couple say that although staff from local organisations are polite, their behaviour and body language often reflect a different attitude.

John and Katie understand that much of the stigma and abuse they suffer is related to their disabilities and that they're “easy targets”. But caring also brings its problems. For instance, they've had trouble using buses because of victimisation by other passengers who, they say, have deliberately occupied the wheelchair bay of the bus and refused to move. This prevents Katie from using the bus. As John has to be with her, it affects them both.

Hopes

John, 50, has a limited income from benefits, and major weekly expenditure on bills, debts and extras, such as the hire of a powered wheelchair. As a result, he wants to get a job. He's well aware of his own limitations and the limitations employers may have in employing someone with his disabilities.

“I don’t like to rely on the state, but I'll need a lot of support in order to work,” John says, adding that he would like to become self-employed. However, he's frustrated by what he sees as a failure to support him. He claims to have been told that “birth-disabled people don't want to be self-employed”.

Although he's been unable to get paid employment, John busies himself with campaigning. He and Katie are founder members of the newly formed Walsall Alliance for Independent Living – which is believed to be the first user-run, user-lead, user-facilitated, and user-controlled organisation in the UK.

Fears for the future

Katie and John clearly love each other and are well-adapted to each other's disabilities. John always believed that he could cope with providing long-term care to Katie, but the couple have realised that the situation could become untenable in the future.

They've asked for support, but they fear decisions that may be made about their capacity to provide care for each other. They feel that they're at risk of being separated from each other because their care needs are so different. Before they married, Katie had lived in residential institutions. For her, going back is “not an option”.

“It’s appalling that the solution is to separate families,” she says.

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Page last reviewed: 17/10/2012

Next review due: 17/10/2014

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