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Half a century with a disability: personal reflections

Just about 50 years ago the polio virus changed me from a teenager interested in girls, fashion, sports and body building into somebody who only can move head andhands unable to breathe on his own. What are the lessons I learned during this half century?

Av Adolf Ratzka

 

Borgerrettighetsforkjemper Adolf Ratzka, kåret av Time til en av Europas mest visjonære personer. Han har gitt hundretusener funksjonshindra over hele Europa troen på at det fins et verdig liv, selv om man har behov for praktisk assistanse for å overvinne samfunnskapte hindere. Feilen er ikke hos den enkelte, men i et feilbygd samfunn. 

Sitater:

- En institusjon er ikke en bygning, men en situasjon der andre har bestemmer over deg.

- Jeg er eksperten på hvordan jeg vil leve mitt eget liv.

 

Not surprisingly, I was forced to discover that there is more to life than nice shirts, good looks and strong legs. I still like my body, it's me, it's a source of pleasure and of problems and I try to take good care of myself.At least as important to our well-being as our body is our ability to make friends and develop relationships. As humans we define ourselves, develop and thrive together with other persons. Friendship and relationships depend on how we feel about ourselves: when you feel you are an interesting and attractive person, chances are that other people will also see you that way. Relationships and their quality depend on how much trust, commitment, respect and compassion you are able to invest. If somebody had approached me when I became disabledoffering me these pearls of concentrated wisdom, I would have chased him away. Who is ready for that kind of reflection at the age of seventeen?

 

As adults, how much we succeed in realizing our innate potential and in contributing to society will greatly depend on how well we know ourselves, how much we trust our intuition,on how much curiosity, focus and patience we develop. As a father I found that parenting is not only about changing diapers. More important and much harder to learn is to see the child as a person in her own right, to listen, to be there when you are needed. Thus, the physical plane while important,is not decisive for our growth as humans, at least not for people with physical disabilities.In the most important aspects of life a disability matters little. Disabled people are profoundly ordinary persons - with strengths and weaknesses, ordinary needs and dreams, disappointments and scars. Just like everybody else. Why should we be different?

 

It will be easier for us to feel that we are ordinary persons, that we are worth as much as anybody else, when we grow up in a family, a neighborhood and a society that looks upon us as ordinary people, has the same expectations of us as of others and treats us like personsof equal value. But, if your family is ashamed of you and hides you inside the house or if your government puts disabled people away for life in residential institutions,it will be difficult for you to feel that your life is worth just as much as that of other children or other citizens. In my case, my development as a person and, in particular, my coming to terms with my disability was delayed by the five years I was forced to live in a hospital ward together with dozens of children with disabilities. There I had almost zero influence over my daily life, everything was pre-determined by the staff. Very seldom I was able to leave the hospital compound, I hardly met people other than my family. No wonder that when I eventually, after five years, was able to leave the hospital, I felt different from the rest of mankind and thought everybody was staring at the freak I was.

 

We need to grow up within our families, within our neighborhoods, go to regular school classes together with our non-disabled brothers and sisters, friends and neighbors. We need to have the education and work that is in line with our interests and abilities - mainstream education and mainstream work. Only in this way we will be exposed to the same challenges as other people and will feel that we too are expected to contribute to our families and society. We don't want special treatment and over-protection. We need to be able to take risks andlearn from our failures and gain strength from our success.

 

We demand the same range of options and the same freedom of choice thatother people take for granted in housing, transportation, education and employment, access to culture, politics, leisure - in everything. We need to be included and involved in all activities and functions, on all levels, in all realms of society. That's our right and our duty as citizens.

But the reality I faced 50 years ago and face still today tells me that most of society has been designed without taking us and our needs into consideration. What is the message of stores, offices and restaurants with steps at the entrance, meeting halls without induction loops for people with hearing impairments? When I see a church with steps leading up to the pulpit I understand that people like me are expected to listen, not to speak. There are still countries where laws prevent persons with disabilities from marrying, adopting a child, voting or practicing certain professions. Physical and attitudinal barriers are still rampant and limit our opportunities. Statistics, where available, tell us that as a group disabled people are dismally underrepresented in the workforce, have lower levels of education, income, social relationships. We are still second class citizens.

 

How do we reach full citizenship? Not by sitting and waiting around until other people, the government, the city council or charity organizations do something for us! Chances are they will come up with solutions that are exclusive and not inclusive, that portray us as special persons who need to be taken care of, solutions that make us more dependent rather than more independent. No, we ourselves have to take the initiative and tell the world exactly what we need, loud and clear.We have to get involved in the whole process from legislation to implementation through our organizations, organizations that are run and controlled by people with disabilities. Because we are the experts on our needs, we have to hold the government accountable for their disability policy.

 

I have never been proud of my disability. It was not my choosing. My disability has been a considerable nuisance and expensive inconvenience which has prevented me from doing many things I would have liked to do. It has made me vulnerable to petty people who take delight in using their position of power for denying us the conditions that would make our lives easier - even when it wouldn't adverselyaffect their agency's budget. How often have such people tempted me to daydream I was a millionaire who'd just show them the finger.If given the choice, I would not hesitate a second for the option of shaking off my disability and just walking away from it all.

 

But I have often felt great pride about belonging to a movement of people who do not take injustice sitting down and are prepared to rise up and fight back. Working in the movement has been an outlet for my rage, has allowed me to turn negative energy into a positive force, has helpedme control my frustration and derive that genuine satisfaction coming from helping others and yourself.

 

So what's the gist of my rumblings? A lot has to be changed to make the planet a more just place for all. Over the last 50 years I could observe and experience a lot of improvements in our living conditions in many regions. But whatever change has taken place, its pace has been so slow. At that rate, a lifetime, several lifetimes will not be enough to achieve "equalization of opportunities".But this is no excuse for not getting involved in the work.The best thing we can do is to start by trying to change ourselves. We do not need to wait until other people get around to changing their attitudes against us. When we look at ourselves differently, other people too will see us in a different light. To change one's perception of oneself is difficult alone. It helps to know people we can identify with, who are or have been in a similar situation. In this way we can share the fruits of our experience and empower each other by raising our consciousness about our role in society and what it takes to liberate ourselves.

You and I have a lot to learn and a lot to teach, to both disabled and non-disabled people.

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Terje Marøy
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