“He should be locked up in a padded cell”
If a nine-year-old autistic boy pulls everything off the shelves in a toy shop, do you glare at his father and tell him to control his child? People with disabilities have never been more visible in Irish communities.
Institutions are slowly being shut down, inclusion in schools is more common and events such as the Special Olympics have improved our attitude towards people with disabilities.
But how far have we come? Some schools have no special-needs assistants and view them and children with disabilities as detrimental to their reputation. Are people with disabilities still feared by the public or have we learned to understand them?
In 2007, the National Disability Authority surveyed the Irish public about disabilities. Results showed most Irish people had an unprompted awareness of physical disabilities, while half of Irish people had an awareness of intellectual or learning disability. Less than half of Irish people thought people with disabilities were treated fairly.
The majority of people believed it was all right to treat people with disabilities more favourably in certain circumstances.
Regardless of the disability, more than half of Irish people agreed that people with disabilities are not able to participate fully in society. The study showed that the most negative attitudes were towards those with mental-health difficulties.
“Expectations of people with intellectual disabilities, and societal attitudes towards people, have definitely changed in recent years,” says Inclusion Ireland spokesperson, Siobhan Kane.
“When Inclusion Ireland was founded in 1961, it was thought that people with intellectual disabilities could not learn to read or write, something which has been proven very wrong since. However, there are still issues around people putting their own preconceived limits onto children and adults with intellectual disabilities, despite such limits being proven time and time again to be easily shifted.
“Members of Inclusion Ireland have reported instances of being refused access to places in the wider community, such as pubs and nightclubs, as well as parents reporting that those working in restaurants or shops can on occasion be very quick to reprimand children who have problems dealing with the sensory overload that accompanies bright lights and lots of noise.
“However, with greater inclusion in the community, especially through schools and employment, community inclusion will be pushed further forward as attitudes continue to change,” she says.
AVRIL WEBSTER was so concerned about the public reaction to her son, Stephen, 13, that she wrote a series of books to help him, and other children with autistic spectrum disorder, to cope in the real world.
The Off We Go series deals with everyday issues, such as going to the hairdresser or the supermarket or a restaurant.
“It’s about being out and about, and it’s about being part of it rather than being left at home all the time. I want to give him confidence and to help him to be part of the local community,” says Webster, who lives in Limerick.
Stephen has a rare chromosomal disorder, a severe intellectual disability and is on the autistic spectrum. He also has sensory-processing disorder (SPD), which means that loud noises, and strange textures and odours can be distressing, causing him to engage in seemingly anti-social behaviours such as rocking, hand-flapping and head-banging. The butcher’s meat slicer, a newborn baby’s cry or the distant drill of a Kango hammer are all sensory triggers for Stephen.
“The invisibility of SPD affects every area of his life,” says Webster. Going to the hairdressers can be fraught with difficulties as Stephen hates the touch of the clippers, the texture of hair gel, and the noise of the hairdryers. At a restaurant, he will tap the walls and floors to gain perspective in the room.
To the outsider, Stephen looks like any other teenager. He loves swimming and singing and playing the drums. Only his gait and slow movements indicate he has a disability. “Sometimes I wished he’d had something more obvious, like being in a wheelchair, because people would be more understanding of his disability then,” says Webster. She has also encountered positive and understanding attitudes towards Stephen.
“One of the big projects was to get Stephen on a plane. We were standing in the queue and there was the noise of the planes landing and we had to do circuits of the floor because Stephen was getting upset. The Ryanair staff very kindly bumped us up the queue and helped us,” she says.
LegoLand in London is a favourite for Stephen. It is a disability-friendly theme park, with fast-track passes to rides, an easy-to-read photo map and extra staff to help with children with disabilities.
“Britain is ahead of us as regards education [for people with disabilities] and that reflects into culture. We still have a long way to go here in Ireland, especially if you look at the number of people we have in institutional settings as compared to Britain.
“When Stephen was about four years old, we were in the waiting room in the doctor’s surgery. He was in a special buggy as he was just learning to walk. A little girl of the same age was pointing and looking at Stephen, and her mother was mortified. But in some ways, this little girl is a message to society — that it’s better to have a conversation rather than pretending it’s not there.
“If we could just let people know about the SPD, and that Stephen’s weird behaviour is because he lives in a different world than we do. But it’s not actually weird if you think of it in the context from which he’s coming,” she says.
“I’ve been a member of the disability club for 13 years, and I’m still not used to it. There’s still quite a stigma attached to disability in Irish culture and people don’t have conversations about disability. Before I had Stephen, if there had been a group of people with a disability, I would’ve crossed the road.”
Daragh Bolton, aged nine, (below left, playing with his brother Mattia) has Down syndrome. He attends a mainstream school in Dublin, has friends and will be making his First Communion in a few weeks. Daragh’s disability manifests itself in communication and intelligibility of speech problems. His father, Jason, has rarely encountered discrimination.
“I don’t think I’ve ever got a negative reaction. Because Down syndrome is visible, I generally get a very positive reaction. Even when Daragh was two years old and having toddler tantrums, people made allowances. If he had purely had autism, because it’s invisible, there are no exceptions made for this,” says Bolton.
“The neighbourhood kids include him, and make a special effort. I was surprised by that because when I was a kid, kids were brutal to anyone who was different.
“At the start I was terrified. I was afraid I’d have a really bad, strong reaction if anyone was critical of Daragh and I was very uptight about it. Not once, in the supermarket, in the street, have we experienced any negativity. And he can be a messer.”
The Boltons encountered negativity in the first few weeks of Daragh’s life, from the most unexpected of sources — the doctors in the hospital in which he was born. “When Daragh was diagnosed with Down syndrome, the hospital staff were awful,” says Bolton.
“When he was three weeks old, I was voraciously reading everything I could about Down syndrome. The professor called us into his office, and there were lots of medical students there. He said ‘Your child has been diagnosed with Down syndrome’ and I was like ‘Yes, and what’s next.’ His attitude was that he had no interest in us after the medical diagnosis. It was just a teaching opportunity for him.
“Overall, though, we’ve had a very positive experience with Daragh,” says Bolton.
Bolton says that levels of acceptance may change as Daragh gets older.
‘Because he’s a child, I don’t know how long that tolerance will last. Social acceptance is a different thing — as he moves forward, I don’t know how he’ll be accepted.”
Beverly Smith, 32, works as a kitchen porter for two days a week in a busy hotel in the suburbs of Cork. She has a mild general learning disability and attended a special school until she was 18. Smith has never encountered serious negativity towards herself or her friends from members of the public.
“Going to a special school wasn’t something we talked about much with our friends at home. The years flew by and you don’t get time to think about these things,” says Smith.
Smith is a leading member of Cork Advocacy Group, and spends much time campaigning for the rights of people with intellectual disabilities. She is in the process of establishing a resource centre for people with intellectual disabilities. She has no qualms about reprimanding members of the public if they stare at her or her friends.
“I tell them to stop staring at me. But some people [with disabilities] can’t do that,” says Smith.
“A lot of people out there think that we can do nothing, but we can work. In work, they don’t know that I have a disability. I’m well able to do my job and I like to keep work separate from my home life.”
Sonja Luan Devine’s son Che, 9, has cerebral palsy, is non-verbal and has severe difficulties with eating. Even though Che can display behaviours such as kicking, hitting and pulling hair, Luan Devine has found attitudes in his hometown of Kinvara, Co Galway, to be overwhelmingly positive. “With Che, because you can see, physically, that he’s struggling, the public usually couldn’t be more understanding,” says Luan Devine.
“We call his chair the ‘magic wheelchair’ because traffic literally stops in the middle of the road to let us across.
“Sometimes when he’s acting up in the shoe shop, for example, the assistants will look at his face and say ‘Ah, he’s grand.’ But it’s never okay for him to kick anybody. I think it’s unfair to children with disabilities not to have loving discipline.
“Sometimes, people speak over him, saying ‘would he like a biscuit’ or ask ‘what’s wrong with him,’ in front of him. It’s very insensitive but it’s ignorance in the purest sense.
“I never actually thought about disability before I had Che,” says Luan Devine. “Irish people are really good-intentioned. We love our kids and I’ve never experienced people being nasty. But I’ve definitely had to explain things to people and show them how to speak to Che. It’s from a genuine lack of experience on their part.
As a nation, we haven’t had the experience of being around people with disabilities because they were removed from their families and sent to institutions. I think there’s a nervousness and insecurity around disability.
“When I have the energy, it’s my job as a parent to mediate between the world and Che. I used to be very self-conscious when he was young.”
Aoife O’Sullivan, 27, loves set-dancing, gym classes, drama and Girl Scouts, and worked in a Dublin chocolate factory for two years, before being let go during the recession. Aoife has Down syndrome, and was born long before the Education for Persons with Special Educational Needs (EPSEN) and Equal Status Act were conceived.
“Attitudes were different 30 ago,” says Aoife’s father, Frank O’Sullivan. “You would have seen boys with Down syndrome back then, but you wouldn’t have seen girls with the syndrome. There was a certain stigma attached to it. If you had a girl with a disability, you kept them in.
“To start with, there was no integration of schools, and it was a struggle to get Aoife into a mainstream school. In the early 1980s, resource teachers were employed for a certain allocation of hours per week to help the mainstream teacher to teach the children with Down syndrome.
“It was a battle getting her into secondary school and there were very few provisions then. Through a lot of talking to officials, Aoife got eight support hours per week.
“Even these days, it wouldn’t be unusual to still find an element of stand-offishness or resistance. It’s the lack of familiarity with the actual disability. But it has made huge grounds since Aoife was born. Integration in the schools and the Special Olympics raised the profile of people with disabilities and exposed them to a larger proportion of the population.
“Not all intellectual disabilities are visible. Aoife’s disability is visible, but it hasn’t made it any more possible to integrate her.”
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