John Horan doesn't want to be photographed in a suit so we meet as he finishes
his volunteer stint at the Oxfam bookshop near his North London home. “Are
you disabled?” he asks. I'm not, and I wonder whether he is making the point
that you can't always identify disability by looking at someone.
Certainly there is something of the militant campaigner about Horan, and given
his history, you can't blame him for that. On December 31, 1999, he was a
Cambridgeeducated barrister of 31 who was earning six figures and who ran
five miles a day. Suddenly, pouring a gin and tonic for his cousin, he
reached for the glass and realised that he wasn't reaching at all. “I said,
‘Good Lord', or I felt I was saying ‘Good Lord', but nothing came out,” he
recalls. “I was paralysed down the right-hand side of my body, and I mean
really paralysed. I couldn't swallow. The seriousness of the situation
rapidly occurred to me, but I couldn't work out how to say to my cousin,
‘I've had a stroke'. That was because of aphasia. I couldn't make a sound.”
Aphasia is the communication difficulty experienced by a third of people who
survive stroke, and by others who have suffered a brain haemorrhage, head
injury or tumour. Every year 50,000 people develop the condition - the
equivalent of one every 11 minutes - and at any one time it affects more
than 250,000 people in the UK. This makes it as common as Parkinson's
disease and MS, yet most of us have never heard of it. It is for this reason
that today the Aphasia Alliance, a group of 11 organisations working in this
field, is launching an awareness campaign. To hammer home its point, it
asked 1,000 people whether they had heard of aphasia; more than 90 per cent
had not. Asked whether it might be a skin disease, a long period of time, a
fruit or a communication disability, 79 per cent had no idea.
Part of the problem is that aphasia, which is caused when the brain's ability
to process language is damaged, is rarely manifested by any physical sign.
The second difficulty is that aphasia takes many forms. It can affect
speech, writing, reading and auditory comprehension, and the variations are
numerous. The common link is that intelligence, and therefore perceptions
and cognitive responses, remains intact, yet because communication is
impaired, it is easy for others to assume that people with aphasia are
neither bright nor articulate.
Horan is interesting because there are few professions that place so much
value on the voice as the Bar - at which, as he puts it, you cannot function
without the ability to lacerate the opposition. It was four weeks after his
stroke before he spoke his first word - which, understandably, was f***, and
delighted his mother on this occasion - but even as he regained language the
return of his dyslexia, which he had experienced in childhood, meant that he
had difficulty remembering and speaking any word with more than three
letters.
“My right hand didn't work; I learnt to write with my left hand, so in theory
I could have said what I wanted by writing it down, but I couldn't spell.
When I had the stroke my work diary was booked up for eight months ahead but
I couldn't even say tea or coffee - even though I had total clarity in my
mind and knew what I wanted to say.” The prognosis? “Very guarded. Only I
believed that I would be a barrister again.”
During a year of speech therapy, Horan's language returned slowly - “I wasn't
always sure what word would come out” - but his sense of identity remained
in pieces. “To me, I had the most important job in the world, dealing with
weighty abstract issues around employment, and here was I with that part of
my framework gone.”
He returned to his chambers, Cloisters, the leading human-rights firm, 16
months after his stroke, but found that no one would employ him. His
response was to throw away his walking stick and to take on no-fee work,
which he knew would prove his capabilities. It did, though his earnings for
his first year back at work plummeted to £3,500. He has since taken on Jack
Straw and the Lord Chancellor and won, and has a growing reputation as a
barrister who represents disabled people.
His speech remains clear and emerges in fluent bursts interrupted by pauses in
which he seems to search for a word. The stroke destroyed a fifth of his
brain but his thought processes are intact, he says, it's just that words
don't always come out quickly.
Inevitably, aphasia has social implications, and Horan found himself with few
solid friends and in need of new ones. Two months ago he met a solicitor and
fellow stroke survivor called Ruth, and when he spots her in a café near his
home he visibly softens and his description of himself as stroppy no longer
seems appropriate.
“I feel reborn,” he says. “If my story is anything to go by, there's not
enough emphasis placed on being in the community, whether it's being a
volunteer at the Oxfam shop or representing other people in the Free
Representation Unit. That's part of the healing process and it means that
you have to dredge up from somewhere the tools that you need to do it.
That's the way that you build up your self-esteem, and you realise that's
the goal. It's trite to say, but it's as though through helping others you
help yourself.”
When I mention this to Carole Pound, the director of innovation at Connect,
the communications disablity network, and a fellow of the Royal College of
Speech and Language Therapists, she comments first that the extent of
Horan's recovery is unusual and, second, that his emphasis on community
involvement and confidence is central for anyone with aphasia.
“Everyone experiences it in different ways. Some people regain quite a lot of
language and others don't regain much at all. In some cases it's their
reading and writing that is affected. People who have aphasia don't always
recognise the condition in other people. One aspect of recovery is how much
speech and communication people recover, another is their confidence and
sense of self. People we see would say that they have been recovering for
ten or 15 years because as they get more information, they develop their
confidence.”
A common consequence is boredom, she says, especially for those who can't
read. In such cases the best prospect for recovery lies with input from
people around them. “Friends and family drop off because it's hard to have a
conversation. What makes a difference is how much people around them develop
their communication skills. If you can train people in a care home to be
better communicators, aphasic people will feel better about themselves, feel
more confident, join in, and because of that they talk better. Without those
communication skills, everyone ignores them and they get depressed because
language is the way we demonstrate our confidence. A lot of people can still
be strategic, bright and thoughtful, but they need the people around them to
adapt. You need a bit of training, but it isn't rocket science; it's about
getting people to re-engage with life.”
Pound also makes a plea for greater understanding of aphasia. “It makes you
pretty abrupt, because there's no embellishment of your language - it's
stripped down, it's very direct. You don't realise the subtleties we use
until you've lost that flexibility.”
Treating aphasia is problematic because of our scant knowledge of how our
communication system works. Richard Wise, a professor of neurology and
consultant neurologist at Imperial College London and the Medical Research
Council, is regarded as the foremost exponent in finding out more. “What we
think happens with stroke-aphasia patients is that they damage their
language system but their memory system is intact,” he says. “So they can
access their memory system in other ways - by sight, smell or sound - but
they won't be able to say, ‘That's a telephone'. This is unlike someone with
a neuro-degenerative disease who can use language and repeat it but as the
disease progresses it becomes empty of content. That's because the memory
system is going, not the language.”
Recovery, he notes, is unpredictable, and this is why most doctors are
non-commital. “Broadly speaking, the bigger the hole in the brain, the less
likely you are to recover, though there are lots of exceptions to the rule.
Nobody has a clue why. We like to think of compartmentalised areas of the
brain doing particular functions, but in language you get multiple bits of
the brain working in different areas and with strong connections with each
other. That's how language emerges, through the communication between these
bits. What's critical is the connections that are taken out.
“There's some evidence that if you wait a week after the stroke, then do very
intensive language therapy for six weeks with endless repetition and hard
work, that leads to the best outcome. But it's phenomenally expensive, the
Government won't pay for it and the vast majority of patients get a few
half-hour sessions. Well, you don't learn to read and write with a few
half-hour sessions.” Wise is working on computerised programmes that he
hopes will plug the gap.
www.aphasiaalliance.org
‘It’s wrong to judge people by their articulacy’
Sheila Hale regards aphasia as “the most interesting and misunderstood illness
there is”. In 1992 her husband, the historian Sir John Hale, had a stroke
that did nothing to damage his fine intellect but left him unable to speak
other than to say “da woah” with bucketloads of expression. “John didn’t
know, except by deduction, that he wasn’t making sense because his thought
processes were fine,” says Hale. “It’s the difference between intelligence
and language perception. We judge people by how articulate they are, and
that’s a mistake.”
Over the next seven years Hale maintained their lively social life, and
obituaries of her gregarious husband credited his exuberance and his ability
to contribute to learned conversations in spite of his limited speech. Hale
also researched best treatment practices, a process she describes in her
book, The Man Who Lost His Language, which is a moving portrait of
her husband and a technical examination of how language works — and
essential reading for anyone with an interest in aphasia.
“You don’t lose conceptual understanding,” she says. “John hadn’t lost
language, he had lost language processing. He could read and he could
understand, and he seemed to be having conversations with people about
Shakespeare. In this situation challenge and stimulation are so important
because they get the brain working better to take over from what’s been
lost.”
