“Gender and background make an enormous distinction in how we expertise disability” | Blogs

Potential is the reason I am a candidate for the UN Disability Committee.

I’ve met people with a disability from all over the world. I’ve seen what happens when you are in hiding, when you experience that nobody believes in you and there is no future, whether you live in a residential complex in Denmark or are hidden on the family property in Ghana. And I’ve seen what happens when people with disabilities begin to realize their potential and live it.

I know the importance of instruments like the UN Convention on the Rights of Persons with Disabilities (CRPD) and the global goals for sustainable development with their promise to “leave no one behind”. But too often they become lofty words on paper that are forgotten in the hunt for something else. And yet I believe in the potential of these instruments: raising awareness, changing the future, improving our lives.

I come from Denmark and have two middle-class parents. And although I was born with a disability, neither of us knew it when I was a kid. I was just clumsy, hated exercise, and found it difficult to sit still. When I was a child, we took a lot of vacations and drove around Europe. When I was 17 I was an exchange student in Indonesia for a year, and when I was 20 I worked on farms in Iceland for some time.

When I was 21 years old, I began to experience severe pain that spread and led to more symptoms. I saw doctors tell me it was just something I imagined. When I was 22 years old, I was working part time as an office assistant trying to manage my life. I was elected to the city council. The pain and other difficulties got worse.

I was married when I was 23, and around that time I finally found a doctor who told me I had Ehlers-Danlos Syndrome (EDS), a rare genetic disorder of connective tissue. A little later I was told that I also have fibromyalgia, which is a chronic pain disorder. I was told if we wanted kids it should be sooner rather than later. When I was 24, I got my first wheelchair, became a mother, and to top it off, I was diagnosed with thyroid cancer.

That year I also left the city council and was later given early retirement. I tried to find myself again and got involved in the Danish disability movement. When I was 23, my mother moved to Ghana to do development work with the unions and I visited her and stayed with her for about a month over the winter.

I also started doing development work. I found the potential to bring young people with disabilities together in Ghana and Denmark as it raised us all and created new energy. How teenagers in Denmark started to believe in themselves and see how they can help others instead of being the passive recipient of others’ help. And I’ve seen young people in Ghana shake the world and create a new future.

I started working again. I was told to reconsider that if I ever left that first job as a development consultant, no one would hire me. But I believed in myself and later worked as an organizational consultant for youth with disabilities in Denmark and Uganda and later became a health policy consultant again with the Fibromyalgia Association. Now I am the vice-chairman of the disability organizations in Denmark. On a voluntary basis, I have been involved in many disability advocacy activities in Denmark, the Nordic countries and the European Community.

I have met many different people with a disability – in Denmark, in Europe and in the Global South – and I know that our gender, disability and background make a huge difference in how we experience disabilities and how we are met by our people become environment. And yet we all have such potential.

I wrote a book about pain with my husband. Pain could be called the major factor. How you are met – and what access you may have to diagnosis and pain management – depends on your gender, age, socio-economic background, and where you live in the world. The best treatment is given to white, young to medium-sized, well-educated men living in Western societies. Imagine what the potential would be if we were all given equal access to diagnosis and treatment?

The potential is why I am a candidate for the CRPD committee. I have a lot of knowledge, strong analytical and problem solving skills, and I know I will be of benefit. But perhaps my greatest asset is my personal experience of being a woman with a rare disability, with a lot of input from everyone I have met around the world.

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