Excluded, again, by the people who say they want to include us

On Thursday, I attended a webinar for an organisation which states they want to support patients becoming innovators. They want people, like me, and our caregivers, to change the health landscape by creating businesses which, if successful, can change the health landscape. This appears to be inclusive, and I attended, hoping they could support my project “Learn to live with MS”. I would have a chance to meet with experts in this area and could also meet other people who are creating new ways of improving our health. A tremendous opportunity.

The meeting lasted an hour, and they explained how the training would be blended, some online and face to face learning. One attendee asked if it was not possible to attend physically, because of fears about COVID and other health concerns about travelling. This was a significant question, as I was wondering if I could even manage the intense training. My pain and fatigue limits how long I can actively learn. I know, in my case, I would need several days to learn something which would take an average person a half day. If given the time, I will learn, but I need the time.

The answer to the question didn’t surprise me, but it did disappointment me. The trainers wanted the students to travel to the venue, as they felt there was no way to achieve the bonding they expect of the students in an online environment. 

In one sentence, they excluded me from being a health innovator.

Words with a crushing effect

Hearing these words was like being crushed. Once more, because of my illnesses and disabilities, I am being excluded. It is really difficult to listen to people who “pretend” to want to include patients, but to place obstacles in our way. Barriers we cannot climb over. My thought was they do not want actual patients, they want healthy and fit patients, or the people who care for us. Those of us who might have life-changing ideas will never be heard, because we are not allowed in the room.

I have written about this before. Our health systems require you to be healthy and strong so you can navigate them. Our social welfare systems require a level of knowledge reserved for those who have the capacity to understand their complexity. The systems of our society require health and fitness, not disability and illness. The organisations which claim they want to include us exclude us.

Several years ago, I travelled to attend a meeting in Brussels and I explained to the organisers I needed more time to travel, so I could recover from the journey. They employed me because of my illness, so I was expecting them to understand. However, I had to fight to get some accommodations. Not everything I needed. Pain and fatigue, for them, were not a valid reason to incur more cost. It wasn’t in their budget, which was designed for the healthy. That was nearly four years ago, well before the pandemic. Now we have video meetings, so attendance is unnecessary, but organisers are not willing, or don’t have the vision, to adapt to a truly hybrid system.

What can I do?

If I was healthy, I would fight this. Taking the time to prepare a letter of complaint, perhaps make some phone calls, or enlist support among my fellow disabled and ill. Unfortunately I am ill and don’t have the strength to fight for my right to be included. This is really hard to swallow, especially as I was the Keynote speaker at a conference titled “Patients as Partners”. We will never be equal partners if those who live with the luxury of health don’t make positive steps of true inclusion. The words are not enough. The actions must follow through.