‘They talk to the dog, not me.’ How people react to disability

Most Irish people are sympathetic to those with a disabilty. But that’s not always what they want

Jackie McBrearty and her guide dog  Rhum  in Sligo. Photograph: Brian Farrell

Jackie McBrearty and her guide dog Rhum in Sligo. Photograph: Brian Farrell

 

Sometimes well-meaning people stop Jackie McBrearty on the street and tell her they’ll pray that God will restore her sight. A stranger once suggested: “You should talk to Jesus”. Another complained that “people like you” should wear a bandana telling the rest of the world what her disability is. “I said ‘does the guide dog not give it away?’ and she said ‘no’,” recalled the 38-year-old, shaking her head in amazement at the things people say.

Don’t get her started on the “does she take sugar” brigade, who will always address remarks to whoever she happens to be with, despite the fact the Donegal native is clearly well capable of speaking for herself.

She is at pains to point out she loves living in Sligo. Stop for a second and someone will ask “are you alright”, she reports, and Sligo County Council has been so helpful trying to resolve accessibility issues that she has senior engineers on speed dial, with some officials having joined her at trouble spots trying to resolve a problem.

But the thoughtlessness of some people, which she acknowledges is often caused by fear, “wrecks my head”.

Technology and her guide dog Rhum have made her a mostly self-sufficient, contented human being

“I go into a restaurant with maybe a friend or a carer and it’s ‘does she want a sandwich . . . will she have tea . . . does she take sugar’. Even in hospitals it’s ‘is she allergic to anything’,” explained McBrearty.

She lost her sight at 16, following a massive retinal detachment.

Having graduated from IT Sligo with a degree in social care, as joint student of the year, she says technology and her guide dog Rhum have made her a mostly self-sufficient, contented human being. Except when people act like she’s not there. “It’s the attitudes, the being ignored that gets to me sometimes. People will even talk to the dog and not to me. They go to the dog ‘aren’t you gorgeous’ and walk off, and I’m like ‘hello. I’m here too’.”

Jackie McBrearty is at pains to point out she loves living in Sligo. Photograph: Brian Farrell

McBrearty has done a disability studies course at St Angela’s College Sligo where the programme director, Susan Carton, is a passionate believer in the “social model” response to disability. Unlike the “medical model”, the focus is on fixing society and not the person. Carton explainsthe social model was kick-started by a group of physically disabled men in the UK in the 1970s who realised that the disadvantage they were experiencing did not come from their impairment, but from the way society was organised.

“They realised if they had decent wheelchairs, adapted transport, and accessible workplaces and colleges, the disablement would start to disintegrate,” explained Carton. “The impairment would remain but the disablement would disappear.”

With Ireland still dithering about ratifying the UN Convention on the Rights of People with Disabilities (the only EU country not to have done so), Carton believes while there has been progress here on many fronts, society still adopts a “sympathetic” approach to those with impairments, without supporting concrete steps to give them their human rights.

“Things are better here than in the UK where the government has managed to convince everyone that they are dirty rotten scroungers of the system,” said the former nurse in the intellectual disability sector. Hate crimes and a clampdown on social welfare payments are making life hell for some disabled in Britain, she said.

But while sympathy is still the response of most Irish people to the estimated 600,000 citizens (13 per  cent of the population) with physical, mental or sensory impairments, Carton says it’s not what most people want. “Can you imagine going through your life having an almost universal sympathy poured on top of your head. Wouldn’t it turn you into a murderous rage.”

Campaigners point to a plethora of potential practical aids such as improved public transport (24 hours notice is required if a wheelchair user wants to take a bus or train and even then the appropriate arrangements may not be in place ), increased personal care hours and people with the savvy to know that a disabled toilet isn’t there to store the mop, bucket and a week’s supply of toilet paper.

I know one woman with cerebral palsy who is married and has a job

Peter Kearns, a part-time lecturer on the disability studies programme at St Angela’s, who is also a film/documentary maker and has cerebral palsy, says the discrimination can be sinister. “I know one woman with cerebral palsy who is married and has a job and when she became pregnant was warned that she would not be able to keep her child,” he said. The woman successfully fought for her parental rights but Kearns said such battles are not uncommon.

Jackie McBrearty has had to fight battles too, and has highlighted a dangerous junction in Sligo town where drivers persist in breaking the lights at a pedestrian crossing, terrifying her previous guide dog to such a degree the animal lost her nerve .

“The dog is trained not to go in front of a running engine when a car crosses the line,” she explained . When CCTV cameras were ruled out at the junction, she started wearing a GoPro camera on her chest hoping to help identify culprits. Her latest dog Rhum seems to understand everything she says. “If I say ‘bank’ she brings me to the door and if I say ‘Glasshouse’ she heads straight to the hotel”.

When McBrearty lost her sight her mother refused to treat her differently . “It was a case of your tea is there on the counter – nothing was handed to me. I’m grateful for that,” she stressed.

She has lived alone for most of her life. She plays tennis, she can chop onions and even fill a hot water bottle. “I just can’t breathe when I’m doing it.” Initially she used a white cane which was exhausting “because if you lose focus for even a second, you get lost”. Her iPhone and her knack for technology has “opened up everything”.

There are apps that identify stops on her bus route, apps for shopping, for scanning documents and reading books. But despite the technological know-how and the third-level education, she is still unemployed – just like 31 per cent of people with a disability, according to the 2011 census. But she is better off than those who need personal assistants (PAs) to survive.

“When budgets are tight, the basic needs are met,” says Susan Carton. “Someone will be there to get you out of bed, washed, dressed and fed, but there will be no socialisation, no going out for coffee, no going shopping for nice clothes. If your PA comes at 8pm you’re going to be in bed at 8.30pm. That’s the reality for some people. Life can be boring and depressing.”

She says society assumes disabled people, especially those with intellectual disability, won’t marry, have children or indeed have sex. The Sexual Offences Act 1993, which made it illegal to have sex with a person with an intellectual disability, was repealed earlier this year but Carton says not much has changed. “They re-wrote a special section instead of letting mainstream laws address the issue. In order to stop people from being exploited and having their hearts broken, we have stopped them from having sex at all.”

‘I grieved for about a year when I came home’

Sinéad Duffy: “I was grief stricken. I had lost my body. But then one day someone made me angry . . . and I came back. For 11 years now I have been me”. Photograph: Brian Farrell

Sinéad Duffy was almost 21 when she came off the back of a motorbike, going head first under a car. She broke her neck in three places . But the horror didn’t end with being paralysed from the neck down.

Duffy’s son Jason was eight months old when the accident happened. After a 12-month stint in hospital and the National Rehabilitation Hospital in Dún Laoghaire, she came home to Sligo to be told she was not allowed have her son live with her.

A long battle ensued which ended only when the Ombudsman found in her favour. Finally, when Jason was almost four, she was allowed to care for him. Now she and his father, Gary Conlon, share parenting responsibilities. “I wouldn’t like another disabled person to go through that. For the child’s sake as well,” she said.

A few weeks ago Sinead and Gary got engaged.

The 33 year-old, who has completed the BA (health and disability studies) degree course at St Angela’s College, Sligo, uses her chin to control her wheelchair. She needs 24-hour care but came to terms with her situation a long time ago.

“I grieved for about a year when I came home. When you are in Dún Laoghaire, you are ’normal’ there, but when I came home I felt isolated, vulnerable, withdrawn. I was not Sinéad Duffy at all.

“I was grief stricken. I had lost my body. But then one day someone made me angry at a meeting. And I came back. For 11 years now I have been me”.

You have to try and not let other people bring you down because of their attitudes

Fighting for her rights, especially for her son, focused her mind, Duffy said. Now the Sligo woman says improving her mobility is not her focus. “I may never get better. My neck is broken. I need to focus on today, on my wedding and losing weight and being able to get into a wedding dress. You have to try and not let other people bring you down because of their attitudes.”

She, Gary and Jason share a love for boxing and she reckons she was the first wheelchair-using boxing coach in the country when training youngsters at Dromahair boxing club in Co Leitrim. Not letting other people get to her is a the key to survival for her.

“I used to have anxiety about having to be fed in a restaurant. I would get panic attacks at the thought of people staring. But I kept throwing myself into that uncomfortable situation and now I don’t get anxious.”

She can use a phone thanks to bluetooth, and has voice-activated software on her laptop . Duffy also drives but her main worry on a trip to town is that disabled toilets are so small she cannot close the door behind the wheelchair. Dunnes Stores in Cranmore, Sligo, is an honourable exception. “I could do doughnuts in that toilet”.

 Problems wheelchair users face when taking buses

Alannah Murray, a film and television production student at Dundalk Institute of Technology, has highlighted the problems wheelchair users face when taking buses , even when the required 24-hour notice is given .

She had three incidents in just 10 days when the bus either had a problem with the ramp, or when a seat had not been removed to make space for her wheelchair.

While some drivers literally bend over backways, carrying her on board and putting her very heavy wheelchair in the hold, she says such incidents affect her career.

“I have missed meetings because of it,” said the award -winning documentary maker.

In response, Bus Éireann said that all its city services were fully wheelchair accessible and operated by low floor vehicles.

A spokesman said that intercity and commuter services were operated by coaches requiring the removal of seats in order to accommodate wheelchairs, so advance notice of 24 hours , and in some cases 48 hours, was required.”

Only one wheelchair can be accommodated on each coach, the spokesman confirmed.

 ‘Most places regard the disabled toilet as a storage area’

Wexford man Al Young also knows about the frustrations of being in a wheelchair. He set up Ataxia Foundation Ireland which will soon launch a campaign for the provision of adequate disabled toilets nationwide . Formerly an IT manager for an e-learning company and a cartoonist, Young was 10 when he developed Friedreich’s ataxia, which causes progressive damage to the nervous system.

“Apart from the fact most places regard the disabled toilet as a storage area for cleaning products,mops buckets, etc, space is so tight in some toilets you have to back the chair in,” he says. “By the time you manoeuvre your way in, get on and off the toilet and get out again , you might need to go again”.

If more builders consulted people like him , it would save a lot of unnecessary grief, he says.

Young says some disabled people don’t get the personal assistant hours they need as carers are overstretched. “I have a friend who went to a football match with his carer who had to leave him there. He got a taxi home and slept in his wheelchair because there was no one to help him into bed.” That friend slipped in his sleep and got caught in his seatbelt, and was hospitalised, he pointed out.

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