No internet, no nuptials

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.