What is your personal definition of Independent Living?

 Personal accounts

What is your personal definition of Independent Living?

 
It is the ability to live independently and productively in the community and to live with the same freedom of choice as a non-disabled person. So it's not that you are living on your own but that you control where you live and have the same range of choices as a non-disabled person. (Jill Weiss)

Independent living means the ability to examine alternatives and make informed decisions and direct one's own life. This ability requires the availability of information, financial resources and peer group support systems. Independent living is a dynamic process, it can never be static. A person's physical, emotional and social environment and subsequent needs are continually changing and evolving. The struggle for Independent Living and personal determination is something each disabled person must approach in their own way. However, as disabled persons we have common problems and concerns and we must continue to work together to eliminate artificial barriers to our full and equal participation in society. (Michael Huck)

Independent living really is an idea, a concept, a thought process. You apply this thought process to your lifestyle. I would think that even if a person were in prison and the only choice that they could make would be whether they would eat their food when they first got it, or eat it an hour later, they would still be practicing Independent Living. (Elizabeth Semkiw)

I feel Independent Living is living independently without the dependency created by an institution.
(Doreen Demas)

Is your current lifestyle an example of Independent Living?

I have not the same choices as a non-disabled person but over the years I have developed a system and options. So I have close to the same range of choices but that's only because I have my own money. If I were simply dependent on what society has to offer, I would not be productive. It's very clear to me that what I am able to do in terms of the work I do in the BC Coalition of the Disabled and in other organizations is a function of the aids I have acquired. If I didn't have them when I needed them, I couldn't make my contribution to society.

Having control over my own workers is very important. I have arranged things so I select my own worker now. That has made a big difference in my life. As long as I was getting homemakers from the government agency that took an enormous amount of time each week. You have to really work to ensure that the homemakers do the work that you need done. I used to establish a close personal relationship with the person so they would have motivation.

Now that I pick my own people they feel responsible to me. Legally they are the agency's employee but they and I know that they are my employees. It takes a lot less of my time and energy this way. It also makes an enormous difference that I have money to pay for extra hours. I'm able to say, this is what I want. If there are things that I want done that are outside the government's guidelines, I pay for it with my own money. (Jill Weiss)

I control my finances, activities, schedule, routine the things that most people control. I have as much control as a person can have. Let's face it, nobody can have perfect control. Control is a key factor. Any aspect of living in which one chooses the management and organization such as medical supports, banking or buying groceries, is an avenue of exercising control. (Elizabeth Semkiw)

Well I feel it is and it is not. My lifestyle is an example of Independent Living as I took responsibility for myself and made the decisions concerning my living arrangements. When I was living with my parents, I chose to move out. Then later on I chose to move back home with my parents. In both living situations I took responsibility for ensuring that my personal care needs were met.

My current living arrangement is not an example of Independent Living because I have not attained the living situation which I desire, or which is complementary to my lifestyle and future goals. This is due to a lack of support services in the community where I live. (Connie Oxelgren)

I would say I'm very independent. I have my own responsibilities, I take full responsibility for my family. I've lived the same as if I were not disabled, up to the point where my disability precludes what I want to do due to architectural barriers or something like that.

I don't feel in the area where I live, which is a rural community, that Independent Living is possible without the backup of a family. There are a lot of people who would say that this is not Independent Living but to me it is. I feel I'm very independent! I'm a mom. It's my house, I'm responsible for it. I manage the cheque book! The car is in my name, I drive it. What I'm saying is that my life is no different than it would be if I wasn't disabled. The only difference is the architectural barriers that say to me, you can't go there, there's no way you can get in. (Myrna Ells)

What obstacles did you have to surmount in order to achieve your current lifestyle?

Well, I think probably the biggest obstacles to disabled people is economic freedom. I think that if you have money, you can do a whole lot more than a disabled person on a pension. I have been on a pension and know what it is like to be on a limited income. The reason I own a home is because I'm married to someone who makes a reasonable income and at one point I was working too, so we were able to buy a home. When we were buying a house we were treated exactly the same as any other consumer buying a house. If a person has a limited income often they have to live in subsidized housing which sometimes provides personal assistance. A lot of times that is ok and you can control the hours but sometimes you can't and you have to be there for the convenience of the service provider. What I like about my life is that I don't have too much of that. (Pat Israel)

Two things, the severity of my disability and what is even more important, the perception of the position that my disability will play in my life. I need a lot of support services. If a person unexpectedly came into my situation, as from an able bodied situation, they might say, "Well, I can't possibly live alone!" However because it came up gradually, I've been able to adjust my perceptions and organization of supports and say, yes, I can do it. The disability is not what's most important. What's most important is your psychological ability to say despite my disability I can do it. To control. (Elizabeth Semkiw)

When I was young I went to a segregated school for blind children - an institution. Before I went there I'm not sure if I realized that I didn't see very well. So all of a sudden I was forced into a totally different situation. You also have to remember that I was taken away from my own cultural setting - the native culture. So it was a big shock for me. I did a lot of observing. I had never been around a blind person in my life before. I didn't speak English either.

At Brantford we didn't get much exposure to the outside community. We were allowed to go out every so often, but it was always in a segregated way. So you don't learn to interact socially with other people. You are used to being with your... I shouldn't say your own kind, but that's how it was. Then you come out and reality hits and you go through this identity crisis. I have come across other people who went to Brantford and who had the same experience.

I was lucky because I didn't do all my schooling at Brantford. I went when I was six and I stayed there until I was twelve. After I left Brantford I had to interact socially with my own peers in public school. It wasn't easy. All of a sudden I realized that in some ways I felt really different, that I wasn't like everybody else. I think I went all through school with that attitude - that feeling of inferiority.

So I think for a while I put all my efforts into being normal. Until one day I realized, normality was accepting myself for what I was. Once I broke out of that I found things so much easier. I've learned how to feel comfortable around people.

The biggest obstacle for me was my attitude. For a while I thought I'd never be independent the way I wanted to be. Then I realized that everybody relies on somebody for something. You have to take the attitude that given the right situation, the right approach, you can function like everybody else. That's a start towards other things. (Doreen Demas)

In 1983 I moved out of my parents house, and into my own rental accommodation. Before making the move, the first and most important obstacle I had to surmount was myself. I needed to have the self-confidence that I could live more independently than in a nursing home. This transformation occurred in an interesting way. In 1981 the Saskatchewan Voice of the Handicapped began a series of Independent Living projects. I gained a lot of support from the peer counseling project. Project staff believed I could move into a more Independent Living situation even when I did not. That was important. Looking back, I view that project as a catalyst towards my becoming more independent.

As far as other obstacles I had to surmount, they tended to be skills I had not developed. On the job I quickly gained knowledge about screening and interview techniques, scheduling attendants and general attendant management.

Some people may encounter funding an attendant a problem. I did not. I simply approached my social assistance worker and explained my personal care needs, the amount of time I required assistance, and the projected total cost. Within a couple of weeks the funding was approved. (Connie Oxelgren)

The biggest obstacle was the realization that my life circumstances changed all of a sudden to being a person with a disability. I made an effort to learn the system. What made me able to live an independent lifestyle in the community was that I treated my disability as a job. I think at this point in time the major obstacles to greater independence or any improvement in my lifestyle are basically financial. (Glenn Cave)

What governmental and community changes do you believe are required to facilitate Independent Living efforts?

There needs to be self-help counseling right away for a newly disabled person. Secondly there needs to be adequate services for someone who has just become disabled: homemaker care, transportation, financial support, etc. I know for myself, I made my disability worse by continuing to work but there was no alternative.

Adequate services in the proper amounts have to be conveniently available. It is already enough to deal with a disability and then to have to deal with the complicated and terribly disorganized service delivery system is to add insult to injury that is already deep enough.

Services all should be under the individual's own control and designed to facilitate independence. For example, it is insane for homemakers to be allowed only to make meals and change beds. They should be allowed to file papers, help with transportation, do all those things that are necessary for a person to be productive. The disabled person should be in control. There is absolutely no reason why a disabled person shouldn't be choosing their own worker. All the necessary supports should be available, then disabled people could go out into the community and succeed or fail on their own merits. (Jill Weiss)

The availability of appropriate housing and support services are tied closely together. In Edmonton a small number of housing facilities for disabled persons have homemaker and personal care services associated with them. This has restricted the range of housing options available to us. Universally available support services would allow us the opportunity to choose housing on the same basis as families without a non-disabled member. (Michael Huck)

I think government should just give disabled persons who need attendants a cheque. Let them hire and fire and train their own attendants. I think that this would make a big difference to any person who needs any kind of personal assistance. I think disabled people would be able to move out of institutions a lot quicker and wouldn't have to stay in them as long if they could get good personal assistance with people they could rely on. I think they should be the ones to train them because they are the experts.

I think we should be like England where there are a lot more in-home services. They have found that the seniors and the disabled can stay home a lot more if there is an appropriate amount of services. I hate to see people going to nursing homes or institutions that could stay out another 10 or 15 years. Each city or small town has to have appropriate amount of services. I think consumers have to have direct input into them and have control. Having the appropriate services will lead to a disabled person having a much better life and doing other things like getting a job or volunteering at a job or whatever. I think the government should recognize Independent Living as a right and the public should recognize it as a right. There should be more publicity aimed at that. I think that now people see it as a privilege.

With respect to community changes I have a complaint to make about the women's movement and women's services that are offered. I find that they're not offered to disabled women, mainly because of inaccessibility. I would like to use women's services because as a feminist, I feel more comfortable with the women who are providing these services. I call and get frustrated because they're inaccessible. We need to remember disabled women are mothers and need access to child care services. They often can't get their kids into a nursery school because it has two or three steps. These services are part and parcel of the world we live in but nobody ever thinks that a disabled woman might need an accessible child care center or something like that. I think we have to think more broadly in terms of services for disabled people. Every service, that any person would use, should be accessible to us. (Pat Israel)

Community needs to change its perspective and to accept that support services are a right not a charity. Government must provide funds to the disabled so they can achieve the change in perspective. Government must also make its own services accessible to all. (Henry Vlug)

They're going to have to smarten up! Two things are going to have to happen. Firstly, they're going to have to listen, to really listen to what disabled people have to say. Secondly, they have to recognize that when you control your life and make your decisions, you also incorporate a risk and that is part of life. No matter how disabled a person is, they choose to take a certain risk because it gives them certain freedoms. It is their choice and it is not anybody else's right to interfere with that choice. Very often a risk is taken again, for freedom, trading one thing off for the other. That has to be recognized by the community. That it is a disabled person's right. (Elizabeth Semkiw)

If I were building an ideal support service system, I think I would develop a program that was very much individualized. Where the individual would come in and they would tell you exactly what their needs were. If they said ok, I need x amount of nursing services or personal assistance services, I need x amount for homemaking, then that need would be assessed and if it was justifiable, (I think you always have to be accountable) then have the monies flow directly to the individual. I'm a firm believer that the individual knows best what their needs are and the best way how to meet them. I think it best if the dollars went directly to the person and they themselves were able to go out and purchase their own services. Three things I think would happen, 1. I think the thing would be more cost effective, 2. better meet the person's needs and 3. it would give them the control that I talked about earlier when I defined Independent Living. You'd soon see a lot of these service providers falling into line. No longer would they be just developing services because the government gives them the bucks. Either they'd be meeting people's needs or they wouldn't be in business. I think the concept of the dollars following the individual is a really good one. (Rick Laird)

What recommendations do you have for other disabled citizens?

Society has to be changed. You can't do it yourself. There is no way. There is no way out except with everyone else. Unless you are really rich and you have a lot of money. The way to make things better for oneself as an individual is to pull and struggle with other disabled persons. You have to keep fighting like a tiger. (Jill Weiss)

I think my one recommendation is to be extremely assertive, sometimes aggressive, because if a social worker says to you that you can't have something and you know you need it, go above that worker's head, go to the top, go to the media. Use what's out there to get what you need. Feel that you're an equal person to everyone else.

Peer support is important. I think in terms of peer support, I can tell a young disabled person a lot of things that no non-disabled social worker could tell them. They might listen to me a lot more and maybe learn things that they would never know. for example, I met a woman who had just become a quadriplegic by MS and the one thing that she was worried about was that she couldn't turn herself in bed at night. I said, "well, why don't you get satin sheets?" Satin sheets for a disabled person are wonderful! You can actually turn yourself on a bed much easier and much quicker. Now, no nurse, no rehab worker had ever told her this and I think they had never thought of it. There are so many little things like this. (Pat Israel)

Make the best of what is available now. It isn't enough but it's there. But don't be satisfied with what is available. Fight for what we are entitled to. We may never get it all, but by fighting we will get more. (Henry Vlug)

I recommend that they really decide if Independent Living is for them, if they want it, that's what it boils down to. Just because everybody else is doing it, they don't have to if they really don't feel that they want to take that risk, they don't want the control, they don't want the decision making. That is their choice too. They should feel free to say "Well, I'd rather be in a situation where this is decided for me and I don't have to worry about it." That is their prerogative. If they want to go into a situation where they have to take a great deal of risk for a great deal of freedom, that is also their choice. They should really sit down and match one against the other. They should write down what they want to gain and what they are willing to lose. They can figure it out from there.

I also emphasize the gradual accepting and organizing more help for yourself because very often, physical conditions for everyone vary from month to month and year to year. Some years you are in really good shape and you don't need a lot of help end the next year you need a lot of help for six months. If you do need more help for a while, don't have a mindset that that's how it's going to stay. Think positively that you can grow out of it, out of the situation that you are in. People have gone from nursing homes to independent lifestyles. It's not that you are in one particular situation and have to stay in it, but adjust with your physical disabilities. If it's time for your body to get more help then get more help.

When we don't gradually increase the help we need, and struggle from an unrealistic sense of independence, then we often fall into crisis situations and there we really lose all control by ending up in a hospital etc. We then have to struggle to get back up where we were.

I would hope that there would be more push. That the advantages of Independent Living both in terms of cost and people should be got across to the powers that be. (Elizabeth Semkiw)

One has to want to be independent. When that's established, everything else will come. Most things are not impossible. Attitude is a very big thing. You're not special because you are disabled. Nobody's responsible for you except yourself. So it's up to you to make your way. Be assertive but not aggressive. (Doreen Demas)

Well, one of the things that is key is that you have to seek out and educate yourself to what resources are available and make best use of what is available. Lots of times what we have to do is piecemeal programs. One program generally doesn't cover it all. You have to look around and try to put together as much service as you can. There are an awful lot of generic services that are available that we don't use. They do cost and sometimes you might have to put out money for them. For example, I know that some of the regular food stores have programs where they deliver groceries. Getting groceries could be a problem for one person. Instead of going to the government and saying will you hire someone to deliver these things, you could pay two bucks, or whatever it is, to have those groceries delivered by the store. There are a lot of services in the community that sometimes are pretty reasonable. You have to make good use of those.

I think disabled people should put some energies into developing their own personal support network. It is really tough to go from a very controlled environment like an institution to full blown Independent Living. You are all of a sudden put in the position of having to make every decision for yourself. It's a real learning process. Not having a well developed personal support network can be disastrous.

Employment is also important so a person should systematically approach trying to get some employment through retraining or schooling. Once you have marketable skills, you can have a good income. There are costs that are associated with Independent Living. It's just easier that if when you need something you can go out and buy it. With public assistance every dollar is accounted for. (Rick Laird)

Source: Defining the Parameters of Independent Living, COPOH, 926-294 Portage Ave., Winnipeg, Man R3C 0B9, Canada

Denna intervju på svenska

To me Independent Living means just what it says -- living independently. It means being able to take care of yourself without being dependent on another human being. One may depend on gadgets like computers; remote control units; motorized wheelchairs; specially equipped homes; baths; toilets and automobiles, but as long as he/she does not ask the other person for help while eating, changing clothes, taking a bath, going to the toilet, travelling to and entering the work place, one is independent .

I do not want to give the impression that in order to live independently one should live alone. One can be married or live with his/her parents but if he/she is independent in the activities mentioned above, one is independent. Being dependent on personal assistants for dressing, toileting, etc., is not independent living as I look at it.

Independent living carries the meaning of self-help. We should not confuse it with attendant care or personal assistance which negates independence and limits one's freedom. Even if you pay for the personal services you need, the fact remains that you are dependent on someone else's time and energy. And if that someone does not show up on time, you cannot do the next thing and you are helpless until he or she comes to help you out.

Is your present lifestyle an example of Independent Living?

To some extent and in certain departments I am independent. I meet most of my personal needs myself. But, like many other disabled people of my region, I am handicapped by the lack of transport and the absence of an accessible environment and in this respect I am not independent.

If I have to travel to a foreign country, I go alone. That's because I can manage myself. And as long as I can manage myself, I shall keep travelling alone. My disability is progressive and I am not sure how long my present state lasts but until it does, I am independent and I am happy.

What obstacles did you have to surmount in order to achieve your current life style?

Independence really is a state of mind. One has to want to be independent; so whatever obstacles or inhibitions one has, exist in the mind. To begin with, I shall say that I am fortunate enough to be able to take care of myself given architecturally safe conditions and then all I have to do is gather courage to do the things I want to do.

When I first went abroad to attend a conference of disabled people, my parents were not sure about my ability to handle myself. But I was confident that Australia was much more safe (accessible) than Pakistan and hence I wouldn't face difficulties. So I went alone. This first trip gave me the confidence needed and now I don't hesitate to go anywhere all alone. I do face certain problems of access in my home but they can all be solved if I put in more time, effort and money.

What governmental and community changes do you believe are required to facilitate Independent Living efforts?

In the Asian sub-continent there is no concept of social security to the disabled. It seems to me that our governments do not realize that disabled people also need economic security. We cannot always remain as financial burdens on our parents, brothers and sisters. We have to have our own income and since most of us are unemployed, we should get some form of allowance like SSI. Economic security is essential. IL allowance for personal assistants is also needed by some but it is a dream wish that may never come true in this part of the world.

Independent living does not mean Independent Living in the home only - it also means being independent where ever you are, at the work place, in the bazaar or at school. Outside the home, the Government 's responsibility lies in providing accessible and safe surroundings. Without architecturally accessible offices, banks, post offices, schools and universities, libraries, museums, community centres, shopping stores etc. our independence is incomplete.

What recommendations do you have for other disabled citizens?

To live a dignified life, you've got to be independent as much as possible, take risks and have control over the forces and factors that concern you. Be responsible for what you do or do not do. Keep striving, keep fighting and keep demanding. Assert yourself; never take a back seat. Don't be discouraged if somebody says "no"; keep banging and knocking until you make a dent.

Economic security is a must for any degree of independence. Without it you cannot choose what you want; you can't go where you like; you can't hire the help you need and you won't have any self respect . So try to find some employment, some paying job or, if that's not possible, set up your own business. Self employment is best for most of us. You can work when are up to it and stop work when you want to. You are master of your time. By having your own job and mastery over time you'll be in greater control .

Address: Mr. Javed Hassan, Association of Physically Disabled Persons, House 2, Street 40, F-7/1, Islamabad, Pakistan

Commentary

Not all of us will feel comfortable with Javed's emphasis on physical independence. We asked Phil Mason from the Hampshire Centre for Independent Living, United Kingdom to respond. Phil controls his electric wheelchair with his clean-shaven chin and uses personal assistance for many everyday life tasks.

Dear Mr. Hassan,

I found your article interesting and I admire all that you have achieved in your life. However we differ on our understanding of Independent Living. I believe that people are inter-dependent. We rely on the work of others in virtually every aspect of our lives. For example: food is grown by farmers; paper is made in pulp mills; the typewriter is made in a factory, etc.

What is important is the degree of control that we exercise in our lives. That is to say, we buy the food we want, we choose the paper that we prefer and use the typewriter that we have chosen, etc. This follows in our lives as disabled people. Independence is being able to control what we do, how we do it and when. Independent living is to do with the degree of control that one exercises, not what I can or cannot physically do for myself. I do not grow my own food. I do not feel obliged to have made this paper before I am prepared to use it. I do not mind using a postman to deliver my letters. Etc. In the same way I do not see that my use of personal assistants in any way diminishes my independence - as long as I control the assistants.

Whilst appreciating your every endeavour to retain the physical ability to do for yourself the things that you require in your every day life I do not see this as being a satisfactory definition of independence.


Philip Mason
Hampshire Centre for Independent Living
4 Plantation Way, Whitehill
Bordon, Hants GU 359 HD
United Kingdom