MY HEALTH EXPERIENCE - EVALD KROG Living with muscular dystrophy is part of my identity
I THINK my parents regarded me as a normal boy and they demanded something from me. They had great expectations of me and I was brought up as a so-called normal child so I have always accepted my situation.
But that’s not to say that it hasn’t been difficult, especially in the teenage years. Of course there were many things that I couldn’t do but there were many, many things that I could do so this was my way of living. I was born like this. I cannot say I’m proud of muscular dystrophy but I’m not sorry because I’ve had such a privileged life.
It’s a part of my identity that I am in this situation and it is not possible to change it.
I know that many people are not happy with their handicap and I think it depends very much on how you see life.
I think I was born with a sense of humour. Not that I cannot be serious – you can be serious and have a sense of humour at the same time. And that helps me a lot but that’s my nature, that’s not because I have muscular dystrophy – that’s my character.
I started campaigning for the right to live independently in the 1960s. It was not so easy in Denmark at that time.
I moved in with my girlfriend in 1968 and we both wanted to be independent so I began to campaign for it.
When you are trying to change attitudes, you realise that you cannot do it overnight, it’s a process. So I think at that time we tried to change attitudes, which is the first step.
I was one of those people who thought it was very wrong that we couldn’t be independent people like other people in society.
We made the breakthrough in 1981 when we introduced this system in Denmark where we can hire our own helpers and fire them.
Today we have a system where if you need help – to be dressed, to bathe, to live – then you can apply for helpers and then they measure out how many hours you need per week and I guess nobody would like to have more help than they need so this was a new way of thinking in our country.
There is no doubt that personal assistants have improved the living conditions for people with a disability in Denmark more than any other initiative in the field.
To have a personal assistant when you have a disability is an important step on the way to a good life and enables a person with a disability to live an independent life on equal terms. It is an ancient way of thinking to place people with disabilities in institutions.
Now with the financial crisis, in Denmark many people are trying to cut the benefits of people in my situation so now we have to defend what we have changed.
I do not agree with people who say that this system costs too much. At first it will cost money yes, but like in Iceland where there are so many unemployed young people I have been negotiating with many people . . . and have persuaded them that it is a good business to give people who are now unemployed possibilities to have a job instead of going around on the streets. We have now persuaded Iceland to adopt the Danish system.
We talk a lot in Denmark about the necessity of having people in work and I think that’s the same in any country so in the first sense you could say it’s expensive to have 24-hour help but then you get so much instead of that.
People with disabilities can be active in society, they can work, maybe not the same hours, maybe not the same level of work but they have something to offer. It’s good for society, it’s healthy for society. We can all contribute.
I have a full-time job as the chairman of Muskelsvindfonden, the muscular dystrophy foundation in Denmark which I founded in 1971.
Changing attitudes has been the biggest work in my life and I guess it will never end.
From day one I wanted to change attitudes to collecting money. I always thought that music could be good.
We organise the famous Green Concert. It has developed from nothing to a big festival in the summer time and we organise everything and get the money that comes out of it and we think it’s a fantastic way to change attitudes to people who believe that we have sad lives and no optimism.
So here we are not just asking people for money but giving something back. It’s been running now for 26 years and getting bigger and bigger.
When I look back at my life, I try to see the positive things. No matter how bad things are, there are still positive things to see.
Anytime I wake up in the morning I say to myself, “what a miracle, you are alive”. And I think many people take everything for granted and life should not be taken for granted. It is a gift. I’m very, very happy with my life.
The ideal situation would be that you get the understanding in different countries that handicapped people really have something to contribute to society and we want to be regarded as normal people.
Nobody can do nothing. We can all contribute. Room for everybody – that is my hope.
Evald Krog is the subject of A Subtle Movement of Air, a documentary by Irish filmmaker Art O'Briain. In conversation with Pamela Duncan
Muscular Dystrophy - What is it?
Muscular dystrophy is a genetic hereditary muscle disease. It is characterised by skeletal muscle weaknesses, defects in muscle proteins and the loss of muscle cells and tissues. There is no cure.
