A few of us in the MCS community have been burning the proverbial candle at both ends and in the middle, trying to generate public awareness and interest to persuade the NS housing authority to reconsider their 3 year battle to evict our good friend Wendy, despite no accessible alternatives being available.
Their unwillingness to understand and accommodate her disability and her medical team’s recommendations… well, it’s something a lot of us have faced and are facing.
Some people with MCS live in cars and tents and in sheds. Or we live in buildings that make us sick because sometimes it’s better than being homeless, if only so that when we break down in tears of absolute desperation we have a private room to do it in. Many of us live in abject poverty. Some of us have always been in poverty, even when we could still work.
There are a small handful of MCSers who are poor and “lucky” enough to have housing that is accessible and safe to live in. Wendy is one of those people. And not by any design by the housing authority, but because she was maintaining it safely for years (without the use of toxic cleaners, fragranced candles, pesticides, and the like) even before her health tipped over and left her housebound.
What does it say about how our society perceives and treats people who are disabled and poor, that we consider those who have accessible housing to live in as being lucky?
I wondered if perhaps jealousy was motivating people to ignore the situation, and refrain from sending an email or making a phone call on her behalf, and if it was preventing them from even liking and sharing posts on social media.
It’s definitely true among some of the general population of non-disabled people, especially those who work and can’t afford a house, and those who think that supporting disabled people to stay alive means we somehow have it easy and are getting a “free” ride.
There are some who don’t understand that disability access isn’t a “nice” thing to do, or some “special favour”. I don’t know how to explain that ramps and other access efforts aren’t an advantage we’re giving to some people and withholding from others. That it’s simply making sure mobility device users can get in the building to do some of the stuff we all need to do. Wide bathroom stalls are just so people can pee while they’re out doing the things we do. That these things aren’t special bonuses, it’s simply a level playing field.
And I sure don’t understand how to explain when it comes to the invisible access needs that people with MCS have. How chemicals in everyday products get rubbed or soaked into surfaces and can’t be removed, or how invisible fragrance fumes can disable us. To me, it’s entirely obvious why we would make exceptions to The Rules when someone is totally housebound and living in the only place that is accessible.
It’s just the right thing to do!
I read the comments on the news articles. Many think that needing social assistance to survive is a vacation. I assure you, it’s not.
Could jealousy really be a factor among our online MCS community too?
It’s a community that Wendy gives to generously, with her genuinely loving support, and wealth of information about Environmental Illness, that is when she is well enough to make sense of the symbols on the screen.
Maybe… Maybe… but when I thought about it more, and then observed some very alarming human behaviour directed toward her, and seemingly out of nowhere, it occurred to me that maybe this is a reminder of our own mortality and vulnerability, and it is just too real, too big, and too scary for some.
Maybe it is easier to ignore this, to ignore her, to unfriend, to block, to ban her from our little support groups, because the pain of losing her is too massive…?
For me, it is.
This is why I am doing everything in my power to try to help. Despite my own loneliness. Despite my own housing crisis. Despite my own grief about the loss of my health and physical community, my ability to work, and to generally be a part of the world in the ways I took for granted, before I was made sick.
Sometimes we just have to put our own shit aside and try to help each other. Nobody else understands the way MCS robs us of our entire lives like other people with MCS. We have to support each other with practical actions too.
If not us, then who?
These thoughts have been brought to you by Laura J. Mac
You can make a difference no matter where in the world you live!
It’s easy to copy and paste the letter found at the link, or you can modify it or write your own. Please address it appropriately depending on who you are sending it to, and choose an email address from the top of the page. Three steps and you’re done.
You can also make a phone call, or two if you can afford the long distance charges.
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Wendy’s House facebook page