Law cannot include what a culture excludes

MIND MOVES: Forum aims to alter our views on how we see those whom we deem to have 'disabilities', writes Tony Bates

IN HER commitment to furthering debate on issues of national importance, President Mary McAleese hosted a forum in Áras an Uachtaráin on the subject of disability in June. She invited a diverse audience of service providers, NGOs, advocates, and people with disabilities to explore how meaningful access and social inclusion could be achieved.

The choice of moderator was a truly inspiring man who brought a rare depth of compassion and wisdom to the occasion. Michael Schwartz, a native of New York, was born profoundly deaf to parents who were given a very bleak outlook for their son's future.

At that time it was believed that people who were born deaf lacked the intellectual capacity of "normal" people. The experts advised his parents to place him in a special school, and not to expect too much of him.

Schwartz's parents, thankfully, had a different view. They charted a course for their son, to where he is now a leading professor of disability law in the United States - the first-ever profoundly deaf person to hold such a position.

Schwartz's presence was electrifying. This is a man who has turned sign language and non-verbal communication into a performing art. His face was poetry in motion, reminiscent of his acknowledged hero, Marcel Marceau. His presentation - translated and narrated by his wife - set a tone for the proceedings that engaged our hearts as well as our minds.

Deafness is a disability that has a special resonance for our President, since her brother John was born profoundly deaf. On another occasion she had recalled how growing up in a large family, she remembered him "tugging at my elbow, or at my other siblings, to remind us to include him".

The key issue that propelled the discussion at this forum was how to make room for people with disabilities, so that their primary disability does not become compounded by exclusion from community, family and social interactions.

Access in a physical as well as a vocational sense was addressed, as were the discriminatory attitudes that create barriers to allowing people with a disability to make their contribution.

There is no denying that many of us view people with a disability inappropriately. Often we cannot see beyond the disability to the person. Joe Bollard, speaking as someone with blindness, spoke about the pain of being treated as a child rather than a fully aware and sensitive adult.

Perhaps we are uneasy in the presence of disability because it reminds us in some conscious or unconscious way of our own vulnerability. We have created a culture that perpetrates an emphasis on appearance and ability and seeks to deny our mortality.

Any suggestion that the truth is otherwise may stir our anxiety and cause us to see disability as a threat from which we want to distance ourselves.

Our national discourse around disability has been dominated by a concern to secure for people with disabilities the basic human rights to which they are entitled. And few are as equipped as Michael Schwartz to speak on this issue. But he cautioned the audience that "the law cannot guarantee what a culture is not willing to give".

The law may guarantee people with disabilities their rights, but our society may continue to exclude them in subtle - or not so subtle - ways. It may ensure them access to a place or position, hitherto denied to them; but there is no guarantee that when they get there, that they will meet people who will relate to them in a "real" way and value their contribution as they would that of any other colleague.

The rightful place of people with a disability in our society will only be possible when our attitudes transform from seeing them in terms of their "deficits" to appreciating them for who they are and what they have to give. Only when this view penetrates our culture will they have a chance of inhabiting the human spaces where they and their gifts belong.

Schwartz and the other speakers at this forum didn't just speak about the gifts that people with a disability bring to society - they embodied them. Their courage, resilience and creativity were palpable. Listening to them it was easy to see that people with a disability should be empowered to access their rightful place at every table and at every forum where their voice is relevant.

Advocacy on behalf of disabled people has become a significant movement in recent years throughout the world. It has secured impressive gains for many who traditionally have been marginalised.

In turn, people with disabilities have amazed us by their achievements and by their dogged determination to break free of the narratives that others would confine them to.

The Paralympics are a glorious illustration of how, given the access, opportunity and the means to improve their performance, human beings can surpass limits that others fail to see beyond.

• A report on this forum, titled Disability - Access and Attitudes, can be downloaded free from www.president.ie

• Tony Bates is founding director of Headstrong - The National Centre for Youth Mental Health (www.headstrong.ie)