Before Easter I shared the following story with The Ehlers-Danlos Society. It’s my story of living with a rare disability:
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 showing nothing. Or nothing detectable. And so, the labelling 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 25. I had a promising career as a politician with a seat on the local council. I was married and had a baby.
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 ever getting any kind of job. I went into early retirement, and basically thought my life was over.
Except it wasn’t.
Somewhere along the way in the efforts of the municipality to keep me in a job and to make my transportation slightly easier someone had gotten me a wheelchair. 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 som 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 getting 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 vicechair of Disabled People’s Organization Denmark. I am board member on the Danish Institute on Human Rights. I am a candidate to 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, loose hope, and give in to pain and frustration.
Getting involved in something larger than myself has meant new drive for me. Challenges has 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 progressively worsening condition I am more dependent on my power wheelchair than ever before. Buying a new car, I have 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 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 changes. 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.