...cos the NHS aren’t listening. Deaf
people with HIV are struggling to access healthcare services due to a failure
to provide sign language intepretors. But that’s just one of their many
issues
Words Howard Hardiman
Images John Clarkson
As
we all know, an HIV diagnosis can make you feel incredibly isolated. But imagine
going for an HIV test and being unable to hear what the nurses or counsellors
are saying. Even worse, on receiving an HIV positive diagnosis, being unable
to communicate how you feel.
This is precisely the situation Chris Hayden (pictured second from left),
43, found himself in. He’d been feeling unwell for a while so decided
to go for an HIV test.
“I had a nagging feeling I should test after a guy fucked me without
a condom. When I returned for my results, I was told I was positive. None
of the staff could use sign language, so even though I was horribly upset,
I felt I couldn’t say anything.
“They booked me in to see a counsellor a fortnight later, with no interpreter,
so when I wanted to talk about how I felt, I was more concerned about trying
to lip-read the
counsellor. I gave up and left, unable to talk to anyone about my diagnosis
until my first three-month check-up: finally an interpreter was there to explain
all the terminology like CD4 counts and viral load.”
Sign of the times
The British Deaf Association (BDA) estimates 250,000 people in the UK use
sign language. Statistically, this means there could be several hundred deaf
sign language users living with HIV in this country. Many find accessing health
and support services a struggle, only adding to the problems HIV presents.
The Royal National Institute for the Deaf (RNID) has called for healthcare
providers to do more to ensure deaf people receive equal access to treatment.
It found 42 per cent of deaf and hard of hearing people had faced difficulties
accessing non-emergency healthcare. When it came to people who depend on British
Sign Language (BSL), it found 70 per cent who attended emergency services
were not provided with a sign language interpreter. While a kitchen accident
may not need much explaining to a doctor, when a deaf person is asking for
PEP (post-exposure prophylaxis) or diagnosed as HIV positive, a lack of communication
presents particular difficulties.
Unequal care
Chris’s experience echoes that of many other deaf people living with
HIV and it can have serious implications for their health. Gerard Maguire
(pictured third from left), 45, president of the Brothers and Sisters’
club, a group for deaf gay men and lesbians, said: “Being unable to
access services at short notice in a language we understand means deaf people
are often ill by the time they receive the care they need. There’s no
sign language equivalent to NHS Direct we can access for immediate advice.”
This is despite the fact deaf people have the same right to use the NHS as
the hearing population, a right that’s supported by the Disability Rights
Commission. It states: “The Disability Discrimination Act requires health
providers to make reasonable adjustments so that disabled people can use their
services. This includes providing an interpreter for deaf patients who use
British Sign Language at emergency and routine appointments. Ideally, NHS
trusts should have on-call sign language interpreters who can accommodate
the needs of patients as required. Where this isn’t possible, there
should be other measures in place to ensure the deaf person has equal access
to the information or service they need.”
Few, if any, NHS trusts have immediate access to interpreters. The Council
for the Advancement of Communication with Deaf People (CACDP) recommends six
to eight weeks’ notice for booking a qualified
sign language interpreter for hospital appointments. When dealing with HIV
cases, particularly at the point of diagnosis or possible exposure, this delay
can pose immense risk to the health of deaf people.
PEP, in particular, is difficult to obtain for sign language users, not only
because of the complex issues around risk and adherence that need to be discussed,
but also in terms of letting sign language users know that it is even available.
Gerard said: “No one has reached out to the deaf community about PEP.
Information that is available is targeted at English speakers, and many of
us don’t have English as our first language. So, even with a leaflet
we’d need to have someone explain what it meant to us in BSL, but we
know there’d be no interpreter. Awful though it may sound, some of us
can’t face the struggle to communicate about something as sensitive
as this, so a lot of deaf people just give up on trying to get emergency help
when they need it.”
Supply fails to meet demand
Qualified sign language interpreters are in short supply in the UK and training
takes several years. CACDP have 270 interpreters on their register, supporting
the estimated population of 250,000 sign language users.
High demand makes booking interpreters difficult and expensive, with a single
appointment costing the service provider over £100. While it’s
straightforward for clinics to provide interpreters for routine check-ups,
when deaf people attend for health screens, walk-in clinics or emergencies,
it’s likely clinics won’t be able to find one in time.
Those, like Mike Hawthorne (far right), 45, from the Brothers and Sisters’
group, lucky enough to have regular access to interpreters, often prefer to
rely on friends.
“I’d have a different interpreter each time I went to the clinic,
so you’d have to explain the terminology to them before your appointment
began, knowing with the next appointment you’d be back to square one.
Then, the agency sent an interpreter I knew. She told me I was allowed to
request the same interpreter and she now comes with me whenever I go to the
clinic. It’s much easier now; I don’t feel like my confidentiality’s
at risk by an ever increasing number of interpreters knowing about my health.”
Communication
and condoms
A lack of sign language provision and information in healthcare isn’t
the only reason deaf people are at risk. Negotiating safer sex is also an
issue.
As Chris explains: “Before I was diagnosed, if a guy wanted to have
unprotected sex. I’d find it very hard to find the confidence to insist
on using a condom. It’s hard to communicate that to a hearing partner
when you have to keep turning the light back on to lip-read them when you’re
having sex.”
Once diagnosed, discussing safer sex is still difficult. Miro Civin (pictured
far left, main picture), an HIV positive deaf man, said: “It’s
hard to find a partner when you’re gay and it’s harder to find
a partner when you’re deaf and gay. So you worry enough about rejection
before you add the difficulty of your HIV status into the mix.”
Community strength
Largely, the support that deaf people receive comes from the strength of community
among sign language users. Apart from enjoying the cultural experiences of
their language and art, the sign language community affords its members access
to strong social bonds and support networks. Non-specialist organisations
like the Brothers and Sisters Club, the RNID and the BDA find themselves filling
the gaps left in HIV provision for the sign language community.
“There seem to be so many support groups for positive people to go to,
even camps and holidays where people can explore their experiences,”
reckons Miro.
“There’s no equivalent for sign language users. When I go to a
mainstream service, people stiffen up and panic. There’s always a pressure
I should be the one to help them out because they’re incapable of understanding
me, rather than the other way around.”
MESMAC (Men who have sex with men: action in the community) used to run a
group for HIV positive deaf gay men, but it closed several years ago. It falls
to deaf people to support one another through their experiences of living
with HIV.
Gerard adds: “Because we’re deaf as well as HIV positive, there’s
a focus on the medical side of everything and we’re not offered or able
to access the wider services available to HIV positive people who aren’t
sign language users. We’ve all asked for alternative therapy, for support
groups, for acupuncture over the years, but none of the deaf positive guys
I know has ever had acupuncture, even though it’s freely available.”
What needs to change
So why haven’t things changed for deaf people when all they want is
to receive the same standard of HIV care we all expect? Improving sign language
provision will only come very slowly if they rely on external pressure from
campaigning organisations like the RNID.
In an NHS fearful of litigation, direct complaints from service users tend
to yield faster results. Of course, the information about how to complain
isn’t provided in BSL and if a videotaped complaint arrived with an
NHS manager, the chances are it would take six to eight weeks before the manager
would be able to bring in an interpreter to understand it.
The Disability Rights Commission recommends NHS trusts should employ sign
language interpreters to be on-call for both routine and emergency appointments.
On a more localised level, clinics can organise training in awareness of the
issues affecting deaf clients for their staff, which will also give them tips
on how to make communication a little easier. Better yet, clinics could train
staff to conversational fluency in sign language or employ more sign language
users, which would neatly sidestep the need to bring in interpreters at all.
As Gerard put it: “Our feelings and experiences of HIV are the same
as other people’s, but the only thing that makes it more difficult for
us is the difficulties around something as basic as communication.”
• Interviews for this feature were conducted in British Sign Language
Further information
• British Deaf Association Campaigning for the rights of the sign
language using community in the UK. www.signcommunity.org.uk
• Brothers and Sisters’ club, Social group for LGBT deaf people.
www.brothers-and-sisters-club.com
• CACDP Awarding body for sign language courses. www.cacdp.org.uk
• Royal National Institute for the Deaf The UK’s largest charity
working on deafness and hearing loss.
www.rnid.org.uk
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