Part of my spinal cord injury is that I have had kidney and bladder problems my whole life. That has lead to virtual kidney failure that now requires dialysis. Dialysis is an extremely time consuming activity and it is also potential life threatening. I do home dialysis that has the best outcome when it comes to overall health and mortality.
For the last year and a half I have been a member of what I so far have considered the best home dialysis organization in existence. Last fall I was invited to speak at their conference in Florida. It went really well and I met some great people there.
Right after I got back to Denmark in January the president and founder of the organization died. His death left a huge vacuum as he had tried to hold onto the reins himself. So suddenly there was no leadership of the organization. It was left to 3 women who have spent until now to gather themselves. To add to the confusion the only one of them who was a kidney patient herself died 3 weeks ago, and the way I see it she was the only one who had any business being on the board of directors.
I have been writing a column on their website and I had tried to be pretty active in general in their community, talking with people and posting in different public places online connected to the organization.
After the death of Rich, the founder, I tried to reach out to the board people. I told them that I probably had some talents (like writing and communicating) that they might use. In the beginning I was brushed off – they needed time to lick their wounds after the death of Rich. I respect that and left them alone for a while.
When 2 months had gone by I tried again. This time I was completely ignored. In the meantime my wife had been asked to hand in her résumé for a position in the organization. She did that but never heard back from them. She didn’t know whether they had received it of not because of the dead silence that by now has become the norm from them.
So last Friday I decided to give it one last shot. I wrote a great piece for their website (my third since January, the first two having been ignored) and sent it off to one of the board members. By Tuesday I had heard nothing from her. I knew she’d been online, she had had time to introduce herself to a facebook group over the weekend but I was (as per usual) ignored completely.
Tuesday I had lost my cool. I posted a rant on their facebook page where many of the members could see it. I reproached them for what I thought was callousness toward the members, laziness and a complete lack of communication skills (what I have described above is just the tip of the iceberg of their lack of communication)
Wednesday I spoke with a bunch of people connected with the group, other kidney patients, professionals and partners of patients. Most of them understood and agreed with what I was saying and where I came from. With others I had some great discussions.
The person I sent my writing to Friday contacted me, pretending to have not seen my rant and being all nice. I was at the height of my rage at that time so I read her the riot act, most likely losing that friendship.
Then this morning (Thursday) I woke up and realized the one thing I had missed all along. I had discovered the proverbial elephant in the room.
The two remaining board members are both widows of deceased kidney patients. They have had their time, they had lost their loved ones and now they are trying to do something good for the world. But they are utterly unable to see things from a patient’s point of view.
I come from the disability rights world and I have worked with lots of people with mental illness professionally. In both settings ‘nothing about us without us’ is an unwavering principle that is so deeply rooted that it is rarely even articulated anymore.
The organizations I have known in the physical and mental disability world have all been run by members of that particular group. Family members were welcome as family members but that was all they were. I have never seen a non-disabled member on any of the boards I have known.
So when I see two former care partners trying to run an organization meant for patients, and when I see them shunning those of us who they are supposed to represent, all my alarm bells start ringing.
I do not disregard the experience of being a care partner. I think it comes with its own set of problems and worries. But the organization is a place for people on home-dialysis. I am convinced it was meant to be primarily for homedialyzors. The problem now is that that apparently it’s not. Yesterday I would have said it has been usurped but I know that the founder had a hard time trusting people and that he was able to control the two ladies who are now left to run the show and that is why it’s in this mess.
In the philosophy and psychology branch called phenomenology they operate with a concept of ‘what it is like to be.’ Basically it says that there is no way anyone can ever know what it is like to be someone or something that they are not. I will never know what it is like to be a woman. And the same goes for care partners, they will never know what it is like to live with kidney disease. They will never know the urgency of living we are faced with every single day because of our condition.
That is really what is so upsetting to me. There is absolutely no understanding or compassion for us as kidney patients. People die around them like flies and what do they do? They stop and bemoan their own loss. They do not think about those who are still here and how they are supposed to help US forward instead of looking back at that which no longer is.
I have been told by a few that they are working behind the scenes and are working on a political level. But if none of the people whom they are supposed to represent have any knowledge of what they are doing, I think it would be better if they go back to their knitting and exchange of cookie recipes. How can anybody represent people they ultimately want nothing to do with? People they shun like they were plagued?
I just don’t understand this. If they are so damn busy with all kinds of other things that they are not able to run the organization in a way where people feel included why is it that they don’t give it up to people who can? Why don’t they pass the baton to people who are more than eager to take over?
Is it the old ‘power corrupts’ argument again?
Basically this is a strong argument for why we as disabled need to take back our power. If we leave it to bleeding heart do-gooders we will end up being reduced to the poor people in need that society at large already see us as. No matter how much they think they are helping us they are not able to fully comprehend what it is like to live with a condition that lasts for the rest of one’s life.
This sort of charity work is an insidious form of oppression and the only people who are there to recognize it and therefore also to stop it is us –the ones who are the recipients of the charity/ oppression.