I’m coming to grips that some days are just not good ones. It’s not just the pain, fatigue, or joint limitations from rheumatoid arthritis, it’s the days when the fight for quality of life is just not going well. To myself, I’ve been calling them “oppression days” or periods of time when I feel the outside world, society, or community is trying to box me in or leave me out.
RA advocacy is a long, slow battle
Recently I got in a fight with the elected leaders of the community in which I live (put simply: the dreaded condo board) about accessibility. For years, I have been asking for renovations to make the common areas of the community more accessible (or accessible at all, in many cases). At first, they didn’t want to hear it.
So, it was a big improvement when folks started to listen and understand how excluded folks who can’t walk use stairs feel when we pay for spaces that we cannot use (like the gym, community/party room, and sauna). It may have helped that I raised some legal risks for doing renovations and not making these improvements.
Running out of patience
But when a proposal letter was shared from one of these leaders about their plan to renovate these areas of the buildings without a whisper of a mention concerning accessibility, I just lost it. I reached out and angrily pleaded my case: you cannot hope to achieve accessibility in a renovation without mentioning the concept and incorporating it from the beginning.
Although I won the argument and accessibility was added, I know there is a bigger war brewing. I will have to be on constant vigil watching the documents released, listening to the meetings, and periodically pinging these leaders to remind them I will not be going away.
This is just one example. Sometimes I get my day started and am faced with three of these situations at once. That is truly an oppression day.
Dazed by oppression
And that’s where the “oppression daze” comes into play because I have to ask myself: with the state of my RA today, what fight do I take on, and what gets put on the back burner? It is truly a daze. On top of brain fog, I’m trying to get my city government to listen to me about making more accessible cabs available. On top of fatigue, I’m trying to find others who will join me in raising a ruckus on important issues.
To be honest, lately I have had to cut bait earlier. I’ve had to retreat from late afternoon email writing and calls. I’ve had to take time out to rest and recover because the oppression gets overwhelming. It exhausts me to explain the same issue repeatedly. It pains me to explain why accessibility should be mandatory and not “just a nice thing to have.”
Fatigue from the fight
I don’t know how others feel, but in the last several years it has all gotten worse. It seems barriers are constantly being erected. It seems like people with conditions and disabilities have been forgotten. The “oppression day” is stretching from days to weeks to months. And the daze to my mind and heart is serious.
If you are feeling it too, you are not alone. The “oppression days/daze” is real! It’s exhausting! But it must not stop our advocacy work to be included. If you need to take a break in your own safe haven, that is understandable. I have days when I can no longer consider the disappointments of the world and retreat to quality time with my husband and a cup of cocoa (or glass of wine!). Take time to refuel and then find a way to carry on.
The voices of real people with conditions and disabilities are needed. It may be a long hard battle, but I know we will ultimately win the war. Why, you may ask? Simply because we have to. Winning means accessibility and inclusion, it means living the full lives we deserve. There is no other choice in the matter. So, although it may seem out of reach (or even impossible), we must persist through these oppression days/daze and find a way to make the needed changes happen.