As I became handicapped 36 years ago I saw myself as natural part of the environment, where I with my disability should fit into. It didn’t even occur to me that maybe the environment was ‘disabled’ so that it prevents me from acting in the best way possible. Over the decades I have noticed that the environment has a very big impact on my activity: does the environment allow me work freely and if the hindrances resulting from my disability become real in practice. In some environments I need another person’s help all the time: I cannot even go to the toilet myself. In some environments I get along on my own.
When we think about accessibility we have to make a difference between two things: independence and getting along on one’s own, which are completely different things. Someone can be independent, although one constantly needs assistance from other people. On the other hand someone who can do everything by himself without physical hindrances may be essentially dependent. Independence in a mental quality and its clearest indication is independent thinking. On the opposite side is the physical performance when one can manage everything on one’s own.
People are at least subconsciously aware of this distinction, because it has been developed various systems to get the best benefit from the mental and spiritual capacity of people. The most common example of these systems are secretaries and assistants of business executives. They are there to secure that the manager don’t need to waste his time for everyday routine tasks, but can focus on the coordination of business operations and on the ‘mental’ growth of the company.
Why is it that when it comes to disabled persons and their assistants people see them only more or less unnecessary costs? However the idea behind is basically the same, although the assistant of a handicapped person must help him with basic functions like cooking, cleaning, dressing, personal hygiene etc.
When I moved into my first own apartment I couldn’t speak, I could walk one kilometre per hour and it was the distance I could walk continuously without a break. I had no assistant and after I came into conflict with the home help I got from social office I decided to do everything by myself. I used all my time to keep my house in order. For social interaction I simply didn’t have time, except in the nearest circle of course. (That is why I especially appreciate the interaction skills of therapists.)
I was left to my own devices. I had done own decisions in my situation in order to make it clear to myself what I was able to do, despite my handicap. It took all my time to fulfil the basic tasks that were needed to manage my one person household, but it was challenging for me at that time and I wanted to see results. Sometimes it was frustrating, but in subconscious mind I knew that it was a testing period I myself had set for myself.
When I noticed that I can manage everything on my own when necessary I had the courage for new challenges and I could estimate, what I was able to withstand physically. Over the decades I have seen that in spite of my physical handicap I can stretch very far.
Until now I have had a personal assistant since 15 years. From the start the function of an assistant is to compensate the disadvantages of the handicap and environmental barriers so that I can concentrate on mobilisation of my creative powers in order to be a productive citizen. The measure of productivity is not money, but my competence to help other people to mobilise their mental and spiritual resources.
Although my success is not measured by money, the working principle of my assistants is the same as that of managing directors. Assistants compensate the disadvantages of everyday routines and environmental barriers so that the assisted person can mobilise his creative powers and maximize growth potential. The main idea of personal assistant services for persons with disabilities is to promote mental and spiritual growth, self-determination and self-motivated, independent living.
I have pondered over questions of accessibility in these days as there is a pipe repair going on in my apartment and I have to live as an evacuee.
A friend of mine is selling her apartment these months and because a buyer has not turned up yet she lets me live in her apartment during the renovation.
The more I think about it the more I like the idea of moving outside the capital area. There is no reason why I should live in Helsinki along Metro tracks when the location is most important for someone else.
I have been browsing the Internet for supply of rental apartments in the nearest neighbourhood, but it seems to me that there are only mobility barriers available. The houses have no elevator, apartments are little labyrinths, doorways are too narrow, thresholds too high, wheelchair accessible public transportation is missing etc.
Positive thing is that the local Disability Policy Program promises that the decision makers intend to make renovations that modify the substandard houses to meet changing accessibility needs. One can only guess, what kind of measures are taken to achieve this goal: Will they install an elevator to the houses without a lift, or will the municipality buy houses that are easy to renovate to meet the accessibility standards? Or will we let market forces rule so that every person, who needs an accessible apartment pays for his house a market price and the municipality may or may not pay the renovation costs.
In that case money is a mobility barrier, just like houses without an elevator, labyrinthine apartments, too narrow doorways and high thresholds, although the money needed would be only 100 000 Euros. For someone it is peanuts, but for most of the people it is a big amount of money.
The unemployment rate is at its peak and people everywhere are trying to create new job opportunities. Supposedly there is not enough money to inhabit the whole country, but in the same time people are complaining that there is not enough room to build new apartments (in Helsinki). Are they really needed? I am surely not the only one, who would prefer to live in province, possibly in an apartment, which has own garden and wild nature around.
Our goal could be a determined reconstruction of the society, where the core component is accessibility and where everyone can live self-motivated and retain the inherent right to self-determination. The political guidelines have already been developed 20 years ago. It needs political will to make them real. When there is a will, there is a way, and the goals will materialize as quickly as a maglev-train travels from North to South.
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