Chapter Three - The views and experiences of people with physical and sensory disabilities
The information presented in this chapter is based on the views expressed by people with physical and sensory disabilities in two focus groups. The groups were held in Dublin and Tullamore. Most of the participants were in their 30s or 40s, and they comprised a range of abilities and disabilities. The discussion focused on two inter-related themes:
- Difficulties experienced by people with a disability
- Independent Living
3.2 Difficulties experienced by people with a physical & sensory disability
The participants in these groups identified a number of areas that they find difficult in their lives as a result of their disabilities, including a lack of understanding and thoughtlessness shown by members of the public, access and design issues, service intransigence, transport problems, unequal access to information on services and entitlements, gaps in services, social isolation, and a variety of personal difficulties, such as cooking and driving. They said that while these were not new difficulties and that the situation had improved over the years, they also said that much more needs to be done by everyone concerned.
Verbatim comments in relation to each of these areas are presented overleaf.
Examples of public thoughtlessness mentioned by participants include 'nasty comments' made by school children when they mistook a person's lack of balance due to Acquired Brain Injury (AB)I with his being drunk; people who park in disabled parking spots; and drivers who park on public footpaths. These and other forms of public thoughtlessness had been experienced by many of the participants.
A few months ago I was passing a school and the kids were outside smoking and they said, here comes a fellow who is drunk. They thought I was drunk that time in the morning but it is just my balance is bad (ABI). They don't realise what it is like to have an injury. They wouldn't get out of the way when I was passing and made nasty comments. Their day might come too. They should be taught about brain injury and disabilities in school.My biggest thing is not my disability. It is with the ignorance and arrogance of people. Disability parking spots, for example, Irish people are disgraceful. I believe it is my right and entitlement to be in that spot and I would like to see people a little more tolerant. They have no respect. It drives me demented because I only trying to get on with my life.
Some participants resented the patronising attitude of some members of the public who appear to assume that if you are in a wheelchair, you are also 'stupid'. Some participants felt the situation was worse when the stereotyping was done by an organisation that was supposed to be working on behalf of people with disabilities.
To me, people are inclined to make up their minds an awful lot as to where I should go. I am a wheelchair user. They forget my grey matter is still working and it works the same as it always did. Fortunately it is not affected as my limbs are affected. It would be lovely to get that clear. We are inclined to be put into boxes: they say things like, 'why would he need to be educated'? or 'they will never work again, they are not capable'. But it is someone else who is putting us into that category. I have come across that loads of times in different organisations. MS is the only one that is good as it is run by people who have MS.It is like my brain is not working. If I am out and someone might ask, is he hungry? I can talk for myself.It is all down to lack of education. You wouldn't realise straight away that I have a disability (sight) but the minute I say that I can't read something, you can immediately sense a change. They think my brain is switched off - that I have no brain. You can sense it. But when you say it, people are generally helpful. Some will ask, aren't you wearing glasses! They don't think before they open their mouths - it is a lack of education
Access and Design Issues
A number of participants mentioned instances where they were unable to access a building, use facilities, or manoeuvre though streets due to poor design of buildings or a lack of maintenance of footpaths. Others spoke of inadequate access to information, education and transport as being critical to the lives of everyone, including people with disabilities. Some venues, such as the O2 and Croke Park, were singled out as the type of venue that should exist all over the country. While a major part of the problem was perceived to be poor design, they felt it was also a question of lack of implementation of existing laws.
I am in a wheelchair and yesterday during the parade (St. Patrick's day), the cars were all on the footpaths and we couldn't get down the road.Issues like people parking on footpaths or in disabled parking spots, this comes back to statutory address and implementation. We have parking spaces but not adequate implementation.In our state of the art hospital, toilets were not wheelchair accessible - the doors open indoors and half the wheel was still sticking out in the hallway! When you leaned forward the hand-dryer would take off. The nurse knew it and she gave me a complaints form without having to ask her and I duly did. They are changing the toilets. The same thing with trolleys that are a good foot above my chair and there was no porter available to lift me on to the trolley. I couldn't get a scan because there wasn't enough space for my wheelchair and I had to go to Beaumont to get it done. It is only a new hospital and that shouldn't happen. The worst thing is that not enough thought goes into things for people with disabilities, even after 7 years in college to become an engineer. Most things are functional rather than suitable.The usual problems when lifts are not working or you have to remember if the toilet is accessible in that shop. How much did we spend on Dundrum and yet the toilets are way too small - whoever designed them!You have to constantly check how many steps are in buildings you visit or friend's houses. If there are too many steps, you can't go. I would phone ahead.
One example of service inflexibility mentioned by a participant included the requirement by one person to use a day centre, which was less convenient for him and further away from his house because he was located in a different region. Another person was frustrated at the amount of paperwork required when looking for specific entitlements.
A problem for me is where the Offaly Resource Centre is located. It is located miles from where I live. We have to come across the worst bog road in the country to get to it. I live 14 miles away from the resource centre in Athlone and the HSE regulations mean that we are in different regions. I attempted to get going to Athlone but I have to go where my bus goes.What has come to the forefront of my mind in recent years is flexibility of service. We have to make our services more flexible to meet our needs as they arise. I am finding that services that are geared to helping people live independently are very structured. They start at certain times and finish at certain times but as human beings our needs change from week to week and even day to day. Increasingly the services have to be wrapped around us rather than us around them.I tried for mobility allowance but just getting nothing but my disability allowance. In order to make my life independent I need help with mobility and I don't have enough stamps on my PRSI. The number of forms you have to fill out is unbelievable and I wouldn't be asking if I didn't need it. I don't know where to go anyone to get assistance or to know what I am entitled to.
Some participants were dissatisfied with the level of services provided to people with disabilities, while others said they had experienced difficulties by not knowing how to access services they needed.
I am trying to get an occupational therapist since October last but nothing has happened. I never asked before, even though I could have and it is not because I am proud but I just thought I could get on with things. Now I can't and my situation has changed since my partner has gone. I am afraid of my life to go out in the frost in case I slip. I did fall and because I had to get a plate and six pins I am scared to go out. It has made me nervous. So I am not really independent and I need someone if I go outside the door and I am getting no help because I don't this or that criteria. I am like the forgotten woman.There is no one-stop shop you can go to and see what you are entitled to. Basically people find out things by word of mouth, which is wrong. I know there are a lot of organisations to help you but you find out almost by accident that you can get this grant if you do that. There is no direct place to know what you can get. I would like to see more disability groups linked in together and information could get to people who need it.When you go somewhere they tell you have to go somewhere else but who? They look at you as if you are just being cranky but you are fed up going from Billy to Jack - exactly - you get browned off.
Some participants said that people living in rural areas were most unfairly treated by transport problems, including infrequent services, difficulties getting on and off public transport, and accessing taxis that are wheelchair accessible. One woman with very poor eyesight had to take two buses to attend the discussion group, the first of which was two and half hours earlier, while another woman has to phone ahead when she wants to get off at a local rail station. Unfortunately, sometimes help is not available and she misses her stop.
Transport is the biggest issue, especially when you are living in a rural area. Today I had to get two buses to get here and I started at 7.45am. I don't mind but the bus is not being used that much. There were just two of us on a 52-seater bus. My fear is that it will go. You have to think outside the box when using a bus. You plan your life around the time the bus goes at. There is no other public transport in my area. In the past 20 years, buses have come on leaps and bounds - greatly improved but it took time for me to get confident and to ask people if you need help.I can't use right side of my body and I live in a rural area. My partner used to drive me everywhere but he is no longer around and I can't afford car. I can walk and try to do what I need to do but I need someone with me. If I go shopping I have to take a taxi or to have someone with me. I need to hold the stick and I can't use my right hand. I can get on a train by pulling myself up but I can't get off without help. When I get into the main station and I have to ask people I don't know to help me get off a train, I feel so small.My only experience is with a wheelchair, where you have to wait for a ramp to get on and off.
Others felt that transport can also be a problem in urban areas, with problems such as, steep ramps to negotiate on some buses, lifts that don't work at rail and Luas stations, buses that are not accessible, and large gaps between trains and platforms. One participant had used the Luas to travel from home to the discussion group and found he could not get off at his designated station because the lift was broken. He considered this to be a normal part of travel in Dublin. However, most people felt that considerable improvements had taken place over the past number of years.
Most participants felt that isolation is a major problem for people with disabilities, especially if they live in remote areas and depend on public transport or their Personal Assistants to bring them places. The service provided by Personal Assistants can be problematic if the Personal Assistant is unsuitable or if they won't or can't carry the person with a disability in their cars due to insurance issues. Others believed that some nightclubs used insurance as an excuse to restrict entry to young people with disabilities.
While some of these participants were in a relationship, most were not. When asked if they would like a relationship with someone of the opposite sex, most replied in the affirmative, although without much hope that it would ever happen. Relationships were difficult to find due to their disability and the unreasonable boundaries that are placed on relationships in their service and by their parents. A personal lack of confidence and a tendency for some people with disabilities to place too much emphasis on their disability are also factors that were perceived to inhibit the development of adult relationships. Few participants used social networking sites, partly out of fear and a lack of computer literacy.
It would be nice to have love in my life. My disability does hold me back in ways.You learn so much about boundaries in the service and in school and at home that it seems to be all about boundaries and not enough about the people. They don't treat people with disabilities like adults and when it comes to relationships it manifests itself as you can't do that. Just because you have a physical disability that you can't have a sexual relationship. I think there is a presumption out there that just because you have a disability, it is not plausible. That is where society needs to change.Boundaries in the service and at home. Parents hold you back a little. This is very disheartening. It is very difficult to get out to meet someone and mingle if you are a wheelchair user. Most people meet someone when they are out in a bar. It is tricky when you are in a wheelchair.I find all these boundaries and political correctness and appropriateness stupid. They have kicked in for everyone, not only us with disability. We thought it was a good idea but it is not. You have to think if a person is a service user or a staff member or even if she is male or female before you talk to them.You can't go out socialising with staff. We go out on social evenings but we have to be home before 10 o'clock and I am 33 - treated like children.....I would like to see what would happen if the staff member would not treat us like babies.Some staff concentrate on rules more than others......I think they need more training.
In addition to these broader issues, some participants also have problems in their personal lives with washing, dressing, shopping, finance, cooking, driving, using car parks, access to gyms, going to pubs and cinemas, going on holidays and managing money.
I need someone to carry my bag. If you do ask, staff in supermarket will help you. I try to do what I can but I can't.I don't have enough money. The cost of bills - people tell me that things cost too much. I know how much things costs and how much change to get and to ask for a receipt. I always check the receipt and the change.... I would have difficulty with money but I am getting over that.I have limited hand movement so trying to take a ticket from parking machine is very difficult or putting coins into machines that are at the wrong heightThe Personal Assistant helps me in helping me get up, get washed and dressed.I need help with looking after bills and maybe help with cooking. I can cook a little bit and it is nice to cook for yourself and not having someone else do it for you.
3.3 Independent Living
Independent living was perceived by this group to be primarily about choice and control. They felt that it was about knowing what you want and having sufficient support and resources to ensure it happens. However, they also acknowledged that independent living was not always about doing things for yourself and that it often entails 'knowing what you want and directing other people to do what you cannot do'.
Making your own choices is important.I live alone with a Personal Assistant service and it is good to have independence and responsibilities. It may sound strange to have your own bills and your own things to worry about. Just like everyone else.Independent living is not about doing everything for yourself. It is about knowing what you want and directing other people to do what you cannot do and that is about a personal assistance service, and to have the Personal Assistant service arranged in such a way that they meet your needs rather than the service provider.
Two males in their 30s who live at home with their parents, were quite happy doing so, even though they were anxious about the future when their parents were no longer able to care for them. An issue for one of these individuals is that he lacks confidence in his abilities, preferring to depend on the support of his parents and staff.
I live with my mam and dad and my dad does whatever I need doing. I would like to think that although ideally I would still like to be living with my mam and dad, life doesn't offer you that and one day they will not be around, I will probably go to shared accommodation or somewhere like that - a group home. I would like to live with a group of people with same disabilities as me, or they don't have to have a disability but it would be nice to have the same disability so that you are not the only one. You would all help each other. Age shouldn't matterI am still at home. I know my parents won't live forever but I would still like to be living where I am at home. God forbid when they pass on, the house is left to me in the will. I would like to be where I am with lot more Personal Assistant support when that needs to kick in. The Personal Assistant can live in but I wouldn't need anyone else and the Personal Assistant would have their own boundaries
One participant had moved into his own apartment when he realised his parents couldn't manage and he would recommend the change to anyone in similar circumstances.
I did live at home for quite a while but then my parents couldn't manage as they got older. My father is now 68 and there is no way he could manage. I am so relieved I moved out into my own apartment. If I could give advice, and I know you are happy living at home, but a time will come with your parents can't manage. I am happy now in my apartment. It is strange having a Personal Assistant and you have this person in the room with you but if you want to be alone and watch TV they will go down to their own room. You have to take charge of your life. You could just sit there all day and not do anything. I need a Personal Assistant because I can't do much on my own without assistance. It is all about being in control. They know their boundaries.
A woman in her 30s said she would like to live in her own apartment but that her parents would not approve.
I would definitely like to live out in an apartment on my own because I am too independent. My parents are too over-protective and although they kind of want me to live on my own, they don't really. It would kill them but I am over the age when I should be living by myself. If they want to come in and visit me, fair enough.
Other obstacles to independent living mentioned by participants included a wish for privacy, a lack of personal confidence, and practical difficulties, such as looking for an apartment and completing forms.
I am a very private person and wouldn't like a Personal Assistant. I want to live private and do my own thing and at my own Personal Assistant. I have never had a Personal Assistant in my life and wouldn't be able to now.It is confidence mainly. I feel when people look at me, they think I should do more for myself, like go on my own and not have buses take me everywhere. We have some transport training in Enable Ireland on how to travel on CIE buses/ Dublin Bus and how to be on a bus and I should be doing that but I think a lot of it is to do with confidence. I am a very nervous person, say going on the ramp. At 36 years of age it is unbelievable and I am a man as well. I feel that if I fell off on a badly marked path or getting off the bus I would be very embarrassed if I broke something. I could get up all right but it is all confidence. I can dress myself and get in and out of my chair. I can get in and out of the bus and drag myself onto the seat. I can dismantle the wheelchair and fold it up myself, the basic things. I could try and do more but I think it is a confidence thing. People have said to me in the past, and rightly so, and my parents are trying to get me to do things before they go, to get me as independent as I can. They taught me all I know and they would like me to be more independent. I don't and I should.
One of the biggest fears for people living independently with their families is that they will eventually end up in an institution.
One of my biggest fears is that I would end up in a home - that a time will come when this thing becomes too big and my family won't be able to manage. Families are not there to be our primary carers and support services should be there. As we get older they should kick in more.The things that worry me are the services that keep us independent and out of institutions. If they were to be cut to the extent that we can't live in our own homes. Most of us have families that give us help they are not supposed to do. Not only that we would get Personal Assistant hours but that they would be quality staff, people trained properly etc.
Other fears highlighted by participants included the loss of Personal Assistant hours and benefits.
I looked for extra hours and they ended up cutting my hours. I am terrified of losing more hours.What would happen if you managed to get education and a good job and something went wrong. You would have some job getting your benefits back - you better believe it. I would be scared of getting a job.Independent living means different things for people at different stages of their lives. Thus, while a person with a disability may not need assistance or choose not to use services when they are younger, their needs and circumstances may change when they get older. However, the system that exists in Ireland makes it difficult for people to 'join' later in life.I didn't bother anyone and just on with my life. Now I am nearly 50 and it is paining me. I worry about what will happen when I get older.Disability has to be seen in life-cycle approach. An independent living life is an integrated life in the community and not in the home. Home-help is just the start of independent living but to make sure we are not confined to home we need services that help us integrate into community. A Personal Assistant to bring me where and when I want to go, be this socialisation, education or employment.
One participant felt that more control over his disability payments would help him live a more independent life.
One way of promoting independent living is to give us choice and control, and one way to do this is to give direct payment so that we will have the means to buy our own services. Important that we understand and that the Department and the NDA does independence does not mean the self-employed model. This is the UK model where you get the money and you end being the employer also. But in Sweden, most people are not the employer. They have the control that comes with having a choice but without the hassle of being the employer. It means more than that - it means us contracting services and having the means to do that. For me to be here at 10am, I need help to get ready - to wash, dress, use the shower etc. What time does a person start work at. A public health nurse doesn't start work until after 9.30am. If I need to be in my work at 9.00am I need someone coming in at 7.30am at the latest. It is about getting the services to be realistic and flexible, and giving us the choice and control. I had people coming in at 8am for 20 years and that worked pretty well but now in negotiation with the HSE to get a replacement and they are faced with their own inflexibility e.g., Public Health Nurses start work at 9.30am. There is a whole process that has to be gone through.
When asked what would help them live more independent and better lives, participants mentioned a number of things including training in how to do things for themselves, such as cooking; opportunities for them to have more input into their lives; more Personal Assistant hours and a more flexible Personal Assistant service; equipment, such as hoists and wheelchairs; grants to adapt their apartments; accessible places and transport; to be treated as normal people; and more control over their funds
You to have more of an input into your future and that you could decide and not others - forced into nursing home. You decide what you need.
3.4 Concluding Comment
The views expressed by people with physical and sensory disabilities are clearly outlined in this chapter through the use of verbatim comments and they require little additional comment. Some of the difficulties they continue to experience in their lives include a perceived lack of understanding and thoughtlessness shown by members of the public, access and design issues, service intransigence, transport problems, unequal access to information on services and entitlements, gaps in services, social isolation, and a variety of personal difficulties, such as cooking and driving. They said that while these were not new difficulties and that the situation had improved over the years, they also said that much more needs to be done by everyone concerned, especially services that have a specific disability remit.
Social isolation would appear to be a critical and increasing problem for many people with disabilities, particularly if they live in remote rural areas. This problem is compounded by difficulties associated with the development of personal relationships, some of which are personal and others the result of families and service providers that are perceived to be too protective.
In addition to these broader issues, some participants also have problems in their personal lives with washing, dressing, shopping, finance, cooking, driving, using car parks, access to gyms, going to pubs and cinemas, going on holidays and managing money.
Independent living was perceived by this group to be primarily about choice and control. They felt that it was about knowing what you want and having sufficient support and resources to ensure it happens. However, they also acknowledged that independent living was not always about doing things for yourself and that it often entails 'knowing what you want and directing other people to do what you cannot do'. The provision of adequate resources and assistance with routine tasks would represent a significant help for many of these participants in living independent lives.