“Gender and background make a huge difference in how we experience disability”

Potential is the reason I am a candidate for the UN disability committee.

I have met people with a disability from all over the world. I have seen what happens when you are hidden away, when you experience that no one believes in you and there is no future, no matter if you live in a housing facility in Denmark or are hidden away in the family compound in Ghana. And I have seen what happens when people with disabilities start realising and living their potential.

I know the importance of tools such as the UN Convention on the Rights of Persons with Disabilities (CRPD) and the global Sustainable Development Goals, with their promise to ‘leave no one behind’. But too often they become lofty words on paper, forgotten in the chase for something else. And yet I believe in the potential of these tools: raising awareness, changing the future, improving our lives.

I am from Denmark, born to two middle-class parents. And even though I was born with a disability, none of us knew it when I was a child. I was just clumsy, hated sports and found it difficult to sit still. We went on many holidays when I was a child, driving through Europe. When I was 17 I was an exchange student to Indonesia for a year, and when I was 20 I spent some time working on farms in Iceland.

Around the time I was 21 I began experiencing severe pain, which spread and developed into more symptoms. I saw doctors, who told me it was just something I imagined. When I was 22, I worked part-time as an office assistant, trying to manage my life, and 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 that I had Ehlers-Danlos Syndrome (EDS), a rare, genetic, connective tissues disorder. A little later I was told that I also had fibromyalgia, a chronic pain disorder. I was told that if we wanted children, it should be sooner rather than later. And so, when I was 24, I got my first wheelchair, I became a mother and to top it all off, I was diagnosed with thyroid cancer.

That year I also left the city council and later I was given early retirement. I tried finding myself again and became engaged in the Danish disability movement. When I was 23 my mother moved to Ghana to do development work with the labour unions, and I visited her, staying with her a month or so during the winter.

I also began to do development work. I found the potential of matching youth with disability in Ghana and in Denmark, how it raised us all and created new energy. How youth in Denmark began believing in themselves, seeing how they could help others instead of being the passive receiver of others’ help. And I saw youth in Ghana rocking the world and creating a new future.

I started working again. I was told that I should reconsider, that no one would hire me if I ever left this first job as a development consultant. But I believed in myself and later went on to work as an organisational consultant with youth with disabilities in Denmark and Uganda, and later again became a health political consultant with the Fibromyalgia Association. Now I am the vice-chair of Disabled People’s Organisations Denmark. On a volunteer level I have been involved in many disability advocacy activities in Denmark, in the Nordic countries and in the European community.

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

I wrote a book about pain together with my husband. Pain could be called The Great Divider. How you are met – and the access you might have to diagnosis and pain treatment – differs, depending on your gender, your age, your socioeconomic background and where you live in the world. The best treatment is given to white, young to middle-aged, well-educated men living in Western societies. Imagine what the potential could be if we all were given the same 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 that I will be an asset. But maybe my biggest asset will be my personal experience, being a woman with a rare disability, with a lot of input from all those I have met around the world.

Author

Sif Holst

Sif is Denmark’s nominee for the committee that monitors implementation of the UN Convention on the Rights of Persons with Disabilities.  Elections for new committee members will be held in late November 2020.