Days of joy and despair

Posted April 13, 2022

A photo from the EU disability conference held in Paris, March 2022. On the photo Sif Holst is sitting on a stage in her wheelchair and in the background a video feed is showing her in a large format with sign language interpretation

Changing the world one mind at a time.

Growing up, I, like most people, had never heard of Ehlers-Danlos syndrome. What I did know was that I was clumsy, and I had trouble sitting still. And I hated school sports.

In my early twenties, the joint issues started flaring up. I had to deal with pain, fatigue, and a body that just didn’t seem to function properly.

Naturally, I went to my doctor. Several doctors in fact. And had numerous tests. All of them showed nothing. Or nothing detectable. And so, the labeling started. I was ‘hysterical’. I was ‘imagining things’. I just had to ‘lose weight’ and ‘increase my exercise regime.’

Eventually, I found a doctor who diagnosed me with EDS. Finally, what I felt in my body had a name. A rational cause that wasn’t just me being a hypochondriac or a hysteric.

I was 24. I had an office job and a promising career as a politician with a seat on the local council. I was married and with a baby on the way.

But then disaster hit again: I was diagnosed with thyroid cancer. At 25 I hit rock bottom. I gave up on my political career and gave up on getting any kind of job. I went into early retirement and basically thought my life was over.

The End.

Except it wasn’t.

I had a wheelchair from when I was pregnant. It wasn’t a very good wheelchair. It was rough and uncomfortable and heavy for me to use. But that wheelchair somehow made me see new possibilities. Because however heavy and uncomfortable it was it meant that I could conserve some of the energy I was using for walking and limit some of the pain that walking meant.

Slowly I found my way back to life. I started involving myself in disability politics. I started doing development work in the global south. A new more comfortable wheelchair meant I could start working part-time as a development consultant, helping young people with disabilities in Ghana get organized and fight for their rights.

Now for more than twenty years, I have been a wheelchair user and a disability rights advocate.Being a wheelchair user means daily obstacles and frequent discrimination. In everyday life. In the workplace. In politics. But for me, it has also meant opportunities to rise to these challenges and to work for change on an individual, local, national, and international level.

Today, I am the vice-chair of Disabled People’s Organization Denmark. I am a board member of the Danish Institute on Human Rights. I am a candidate for the UN’s Committee on the Convention on the Rights of Persons with Disabilities (CRPD). I work for change on a national and international level. I work with experts and disability advocates in the Nordic Countries, in the EU, and hope to soon be working at the international level in the CRPD.

I still have bad days. I still sometimes feel I am facing insurmountable challenges. I still get exasperated, despair, lose hope, and give in to pain and frustration. Getting involved in something larger than myself has meant a new drive for me. Challenges have made me rise to the occasion and working for the rights of people with disabilities has meant a new view of my own life.

I still have chronic pain and living with a body that grows more worn-down, I am more dependent on my power wheelchair than ever before. Buying a new car, I have had to focus extra on driving comfort and suspension. I am dependent on a personal assistant and my family to live my life and do my work. But being a disability advocate has given me a singular purpose and the ability to affect changes for people potentially all over the world gives my day focus and my life meaning.

My life-like so many with disabilities – is a constant uphill battle. A battle against prejudice, ignorance, and rigid economic thinking. But my life is also rewarding and giving and joyful. My life is made so much richer by trying to make a life of reward and joy accessible to as many people as possible. Because change for the better is possible if we work together. If we make our voices heard.

My life has been changed. Changes that meant that I don’t have the life I imagined, but I do have a life of joy and meaning. And I strongly believe that together, we can make changes, international institutions, governments, civil society, and the individual who just wants to make sure, that no one is left behind.

Making the world better for us all.

Changing the world one mind at a time.

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