Fighting an uphill battle, alone

A month ago, I was on the verge of a breakdown. I wanted to kick, hit, and scream and I wanted to hide beneath my bedcovers and just stay there forever (or at least for a long, long time).

I am a woman born with a disability, though the full effect did not emerge until I was in my twenties. I have a good life in many respects, but it also feels like I am fighting an uphill battle and most of the time, alone.

On this day a broken wheelchair was part of the reason, that I was about to crumble. My job, my obligations, take me on many travels. Of course, not abroad during COVID-19, but in September I had just gone on my first plane travel in almost to year. First to Iceland to make a speech about the UN Convention on the Rights of Persons with Disabilities and then to several meetings in Brussels. But the travel also resulted in the airline breaking my wheelchair.

The broken wheelchair meant that I have not been able to do the part of my job that requires airline travelling, at least not as well as I can in person. I missed important meetings, where I could have made an impact on behalf of persons with disabilities. Worse I didn’t know when I could find a solution, so I could only fear what more I would miss and if I could continue my campaign to be elected to the UN Committee that monitors the disability convention. But the most frustrating feeling was that for almost two months, I had spent so much time trying to manage the situation, talking to the airline, with the authorities, with the insurance companies and getting nowhere. And I felt alone in my efforts.

I was feeling low in energy, for many weeks I had been working more than 40 hours pr. week, doing what I believe in, but it was hard dealing with this also. And it was not the only battle, there was also issues with other disability aids and on the family front health concerns regarding my mother-on-law and when we had driven to Brussels for meeting in the middle of October, I had encountered more barriers than unusual and had even had my disability van impounded and had to wait outside an inaccessible police station for a long time on a cold and rainy day.

And on that day, where I felt the only option left was screaming or hiding, I had been forced to send my husband in COVID quarantine (luckily, he later had a negative test), he is my primary care-giver as well as my life-companion and I felt more alone than ever before.

My lifeline on this day was a World Pulse sister, she gave me air to breathe and the courage to go on. I was no further in dealing with all those different troubles, actually, after almost three months I am still dealing with the airline and all the others, who still offer no help even if the law demands that they should. But I no longer felt alone and that made all the difference.

This is just one example from my life. It was an example of a recent, difficult situation. But having a disability is often an uphill battle, a battle to get help, for example health care, social services, disability aids. The challenges of living in a society where we face so many barriers, stigmatization, lack of opportunities, barriers that limits us. But the feeling of being alone, as we face all these uphill battles, is really difficult. Maybe we have a family that supports us, some friends, a community, for example a disability organization or if we are lucky another community, for example a religious community.

Women have gotten better at supporting other women, and some men also support women. But when it comes to persons with disability, we often step back. Someone is probably going to do something to help, in a welfare state like Denmark we turn to the authorities, in other countries it might be to local charities. I have done it myself, feeling that I could do nothing to help and then I stepped away instead of stepping forward as my World Pulse sister did, when I was in need. Because even if you cannot solve the problem itself, you can still provide a shoulder to cry on, some support.

We need to create a change, no one should stand alone. And groups, such as persons with a disability, who are marginalized by our society really needs to feel that someone is in our corner. That it is not only persons with disabilities or those very close to us, who speaks up, when we see injustice, when we see people denied equal opportunities. We should be allies, we should call for change and be ready to give moral support.

To create change, to create an impact, I suggest an initiative to guide us along and I hope you will support it.

Read about the initiative here: https://www.worldpulse.com/community/users/sif-holst/campaigns/101940