I was asked to take part in a project going on in Trinity College which had to do with research. I said that I would give it a go. I went with my support person, Emer, to a series of workshops (2008-2009). These workshops taught us about looking at research questions, and how to do a piece of research.
Following these workshops I decided that I would very much like to do some research myself. The topic which I chose was Attitudes towards people with disabilities.
I wanted to carry out this research within my own service— Prosper Fingal—and I decided that I would need to gather information from service users within three of our day services. First of all then I had to ring the managers of the different day services for permission to visit each service, and explain my project to the service users before I carried out any focus groups. I then put up a poster asking people to sign their name on a sheet of paper if they wanted to take part. I had to come to the services on days and times which suited the service.
Gathering the information
With some support, I constructed 10 different research questions. This was more difficult than it initially appeared as I had to make sure that the questions didn’t offend anybody! My questions were:
- What does disability mean?
- Who here thinks they have a disability?
- How do you know you have a disability?
- Are people with disability treated fairly?
- Are people with disabilities respected?
- Are people with disabilities treated the same as people without a disability?
- Are people with disabilities allowed to make their own decisions? Are their decisions respected?
- Are people with disabilities ever treated better because they have a disability?
- Do you have stories about being treated fairly or unfairly? Have you ever seen someone else with a disability being treated fairly or unfairly?
The next question asked people to discuss if they have been treated fairly or unfairly in a number of different places—home, out and about, work, college, public transport, health, neighbours, services.
I formed ‘focus groups’ at each of the day centres, to whom I asked my 10 questions. I carried out 7 focus groups altogether which involved 45 participants. I asked for permission to video these focus groups—I received written consent from everyone who took part. I think the most in any group was 10—we had decided to have no more than 10.
My most surprising finding was that a lot of people didn’t know that they had a disability. I didn’t find any major differences between the three centres. My own views on my findings are as follows:
What does disability mean?
I was surprised that people didn’t know that they had a disability. I think that the parents should tell their kids about their disability when they get to a certain age. It will get harder to understand as they get older.
Who here thinks they have a disability?
I was confused that some people said they didn’t have a disability even though they have to have a disability to go to Prosper Fingal. Some people mightn’t want to admit that they have a disability because people might treat them differently.
How do you know you have a disability
I feel that if someone has a child that they think has a disability, when it shows in them they should get an assessment done to find how advanced their child’s disability is. Then the parents could know better how to care for the child as they get older. They will know how to treat the child’s behaviour.
Are people with disability treated fairly?
The answer I agree most with is definitely ‘NO’. The reason why is because:
- Most parents mightn’t allow their children with a disability to have kids
- not being allowed to have a relationship
- not being allowed to go on holidays with friends (not able for plane, weather etc.)
- not being allowed to have an apartment to live independently. I agree that some people treat people with a disability like kids. Just because someone acts like a child sometimes (e.g. expressions), it doesn’t mean they should be treated like one.
Are people with disabilities respected?
My big one here again is ‘NO’; the simple reason is because people with disabilities are not allowed to make their own choices. Like with their own money, for example, some parents keep their disability allowance, they don’t have the right to do this. I understand that people should hand up money at home, but they should get their allowance into their hand and then they give the money up to the parents.
Are people with disabilities treated the same as people without disabilities?
I was surprised that some people thought people with disabilities are treated the same as people without disabilities because I have lots of stories of people with disabilities being treated badly. I think that some people with a disabilities didn’t recognise or understand that they were not being treated the same. It could be down to the type of disability the person has.
I think people with disabilities need more rights because some people are afraid to speak up for themselves. With people and jobs, I think if a person’s disability is on show, like a deformity, they would be less likely to get the job because the employer might think that the person can’t do the job because they look different or you can see the disability. The employer assumes the person can’t do the job properly. They don’t understand disabilities.
Are people with disabilities allowed to make their own decisions? Are their decisions respected?
I feel very, very strongly that people are not allowed to make their own decisions and I don’t think their decisions are respected. Maybe the decisions that people are allowed to make are only small ones that aren’t that important. I think the problem is with big decisions like people going into town if they never been before, and parents might say no. I know that children and people with severe disabilities need their parents to make decisions for them, but people who are able to make their own decisions should be allowed. just with help from their parents and staff.
Are people with disabilities ever treated better because they have a disability?
I do think some people are treated better, but some people are not. For example, if someone with a disability did something good they might get praise, but it might only be to make the person feel happier in themselves. I agree that people with disabilities should be treated equally.
I do understand that there are times when people with disabilities might need special help, like people who need help to eat or dress themselves. They still shouldn’t be treated any differently, they should get the equipment they need so that they are not left out.
Do you have stories about being treated fairly or unfairly? What about things you have seen?
I don’t feel good at all hearing these stories; some of these things have happened to me. Growing up, I was treated differently than my brothers and sisters because I have a disability. I understand what its like to be treated unfairly like the people who spoke to me.
I feel very strongly about how people were treated on the bus. There aren’t many buses with ramps and this is wrong—especially for people in wheelchairs who have no other choice than to take the bus. One thing that is bad is that if you don’t show your disability people mightn’t give up the disability seat on the bus for you.
How people have been treated in different places.
The worst place people have been treated badly is on public transport. I am glad most people are treated well at home but I’d worry that people in residential services mightn’t be treated so fairly because there are so many people in the house and staff are in charge and there are rules. I feel that if people with disabilities go out without a staff or parents they might be refused entry into a place because the person in charge doesn’t understand disability and this is very wrong. They might be afraid the person would cause trouble.
Overall summary of my experience as a researcher
I really enjoyed the experience and would do research again if I got the chance. Within the focus groups some people did speak up and others didn’t. When I asked the questions, I wanted to say things as well but I couldn’t until all the research was done—this would have been giving my views! I found it hard to stay quiet and let others give their views. I didn’t agree with a lot of the answers that were given. I would really like something to come out of my research and for a lot of people to think about the findings. I couldn’t have done this research without the cooperation of all the participants and services involved, or without my support person, so I would like to thank them all very much.