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Case study

The name of the service user mentioned in this article have been changed   

Situation: Kevin Ellis is 32. He lives in a supported community home run by a voluntary organisation and  is a wheelchair user who also suffers from cerebral palsy, which causes severely slurred speech. He also suffers from agoraphobia. Kevin had become very depressed about being single. "His mind, however, is very sharp - he's written two books. There's a lot about him to love," says his brother Roger, who had bought Kevin a top of the range PC to encourage his writing. 

Problem: Fed up with society's attitude that if you're legs don't work, then neither does your heart, Roger believed that with Kevin's typing skills he could correspond with people through a dating service. Surfing the internet, Kevin came across a site giving the opportunity to meet "beautiful and often educated Chinese ladies" who would like to marry a westerner. Told that "they can speak at least basic English, they would like start a friendship with you..." Kevin expressed his interest. He has since chosen the woman he wants to marry from the profiles and pictures sent to him. Roger thinks this has gone too far and has taken his PC away. Kevin has asked the staff in the home to replace it, as he wants to sort out his planned marriage. Staff, unsure about the legality of Kevin's intentions, have so far not done so - despite Kevin being able to afford to do so.

Panel responses

Cath Turner
When considering the contrasting views of Roger and Kevin Ellis, the worker would need to balance Roger's concerns with Kevin's human rights. In trying to bring some resolution, the worker would be meeting a dilemma that has become a challenge in social work today.

It was Roger's idea for Kevin to sign up to a dating service; what did he expect the outcome to be? It is clear that this result was unexpected. On the one hand, Roger has stated that Kevin's mind "is very sharp". On the other hand, he does not believe Kevin can make the decision to meet and possibly marry a woman using the internet. We need to understand what Roger's worries are by exploring these with him.

Is Roger concerned about his brother's welfare? Does Roger worry that Kevin is na‹ve about intimate relationships, or think that Kevin is being used by someone to gain British citizenship? Does Roger find that Kevin's new found independence is at odds with his brother's current role within the family - that of being cared for, and dependent? Is it difficult for Roger or other members of the family to accept Kevin's sexual needs?

If Roger were to understand his brother's perspective, his views may change. Clearly, family support at a time like this would mean a lot to Kevin. The kind of help that could be offered might include being directed to help organisations like the Association to Aid the Personal and Sexual Relationships of People with a Disability (Spod)for information and advice. In addition to disabled people, Spod is also available to professionals and carers who may need information and support. Its ethos is to enable disabled people to become full and equal members of society.

If Roger wanted to get independent legal advice about immigration law, we could advise him to contact his local Citizens Advice Bureau.

One of Roger's concerns could be that depression and agoraphobia may be affecting Kevin's judgement. A psychological or psychiatric assessment or both could be offered to assess this and to explore his ability to make his own decisions. Kevin could therefore have the opportunity to prove to his brother that he is capable of making his own choices about his life, although he is disabled.

Sheila Hart
For many people, the realisation that disabled people have sexual desires is uncomfortable. This scenario is a good example of how many families may react in a similar situation.

It would be essential to ensure that Kevin's rights, particularly within articles 8 and 12 of the Human Rights Act 1998, are fully addressed and to make certain that his emotional and sexual well-being is perceived to be as important as his physical health needs.

The main issue here, for Kevin, is his right to make his own decisions about how he wants to live his life. Mediation could be offered to Kevin and Roger through either a voluntary agency or with the assistance of his care manager. Kevin could also access professional counsellors for advice at Spod.

The first priority would be to check with Kevin that he is aware that he could be at risk of being financially or emotionally compromised. Either one or both parties could find themselves in situations where they are being abused. There is an issue that Kevin could be vulnerable and his safety should be discussed with him.

We should check that Kevin would not be helping someone breach any immigration law. Kevin would need to know if the woman could legally remain in the UK. If you marry a British citizen, it is not an automatic right to remain in this country.

If Roger can't be persuaded to give the computer back to Kevin, and Kevin wishes to buy a computer for himself, it would be reasonable to expect the staff to carry out his request. However, it would be important at this stage that Kevin is advised that he cannot expect any professionals to assist him with any illegal activity.

Has Kevin thought about the cost involved of the woman coming to this country, and who will pay? Does he want to live with her within the home or live independently? Without his computer, and without the support of his family, how will he arrange things? An advocate could be helpful for Kevin, to ensure that his views are taken into consideration. This might help him to look at the practicalities with regards to his future and possible alternative accommodation.

User view 

This is the most outrageous piece of paternalistic bullying, by both Kevin's brother and the staff of the care home, writes Simon Heng. Everyone seems to recognise that this man is both intelligent and, given the right assistance in the form of a computer, perfectly capable of ordering and expressing his thoughts and feelings. Why, then, do they think that he should not be allowed to make decisions about his own life, whether or not they agree? Why do they feel they have the right to make some decisions on his behalf?  

First, there is the question of the legality of Kevin's brother's actions. If one adult gives another adult a gift, do they have a legal right to claim it back at any time? I doubt it. Isn't this theft?  

Second, there is the legality of the care home staff's refusal to enable their client to spend his own money. Unless Kevin is legally deemed to be incapable of taking charge of his own affairs, this is clearly a breach of his human rights. Would the staff feel as comfortable making decisions about what clothes Kevin could to buy for himself, which people he should be allowed to befriend, which way he could vote? Would you feel happy if somebody were making these decisions for you? 

Personally, I wouldn't form a relationship with a view to marriage through a web-based marriage broker. If Kevin hasn't had an intimate, loving relationship before, arranging to marry somebody that he's never met, from a completely different culture, seems like an unwise move.  

It's hard enough to appreciate what a long-term relationship might involve, even when you have been through other relationships, and you have discussed the possible consequences with your potential partner. How much more difficult would it be to do this by proxy? Has he made it clear, in his communications with the agency, that he has a severe disability? Is Kevin aware that, traditionally, physical disability within the Chinese family is seen as a sign of disgrace? Would he expect his potential wife to be his carer as well?  

Kevin needs to talk over these issues urgently, in confidence, with someone he can trust. I believe this case betrays an underlying prejudiced view of disabled people as children, confusing the need to be looked after physically with the need to be protected emotionally. Part of being a responsible adult is having the freedom to make one's own mistakes.  

Simon Heng is a disabled service user.