I spent most of yesterday grieving. As some of you may have heard, my dear friend and fellow writer on the Orbit, Niki Massey, passed away yesterday. Specific details about the cause of death are unavailable and it would be irresponsible to those who loved her to speculate.
I keep trying to find something to blame for what came as a shock to so many of us.
The disability system which makes people who are already struggling, who are already dealing with more than anyone should have to, jump through hoops to get services they need to survive. How many of us were denied the first, second, or third time around when applying for disability? It took me a year and a half. I was denied twice. I received a letter saying that they didn’t think my disability counted as something “continuous or recurring.” This despite the fact that I’ve been admitted to hospital at least twice a year since I was diagnosed. It wasn’t until faced with having to read a medical file that took stood almost 2 feet high and that spanning only the last ten years or so, that they finally conceded that maybe I had a point. I have to prove that I’m still sick after 5 years though.
I know so many people who are disabled, who are impeded from being able to work normally because of their disability, or who are slowly killing themselves trying to work while disabled and with no accommodations. So many who think they can’t apply while they work, and who can’t survive the unbelievably long period of time it takes to apply without working.
I know so many people who have been denied even though they live with constant and unimaginable pain.
We crawl over broken glass to get a measly pittance that isn’t really enough to live on. Then once we have it, we still spend more energy than is imaginable in trying to supplement that income enough to survive. Enough to be able to function.
I use up every ounce of energy I have and even more, just to be able to find the money to buy groceries, to be able to buy my medicine. Every time I go to the doctor, to deal with my increased pain they tell me I have to relax, but I can’t. I can’t. Because relaxation means I can’t eat. It means Alyssa, who is working every bit as hard as I am, doesn’t get to eat.
This is the reality we live with. And I’m the lucky one because I’ve passed the first hurdle of actually getting disability.
I want to blame our broken medical system, which treats fat people, women, black people, and mentally ill people like we’re not human. If you’re all the above then every diagnosis, every treatment, is a fight. And it’s a fight that is being undertaken when you are already wounded, already bleeding, already exhausted. It’s a fight with the deck stacked against you from the beginning.
I want to blame the systemic racism and ableism that not only contributes to the first two issues but makes it dangerous just to exist. I read somewhere that something like 1 in 2 of those people killed by police are disabled. We already know that being black can be a capital offence in the eyes of the police who have no problem with committing murder. Who don’t even see it as murder because that would mean having to admit that black people are human beings who matter. That black lives matter. Imagine being a disabled black woman in that environment. Imagine living with the fear that being stopped by police, that having the police called on you, whether out of malice or out of ill-conceived concern, could mean your death.
Despite all of these pressures, despite living with chronic pain and having to cope with low energy, despite all of that Niki stood up and fought for what is right.
Her writing served as an education for more than one of us. Her words, at times angry, at times sad, at times sarcastic, at times even happy or excited, they will live on. Not just on the page, but in the hearts, minds, and actions of those people who she taught how to be better. We will all strive to live up to the faith that she had in us. Because even when her words were brought on by despair, the simple act of sharing them means that she DID have faith in us. Faith that we could do better. That we could BE better. That we could change the world.
She stood up for people who needed abortions. She was a clinic escort and encouraged others to do the same. She believed in reproductive justice. She believed in holding sexual harassers and abusers and rapists accountable for their actions.
Niki Massey is gone, and my heart and that of many people bleeds because of it. She will be missed but she will not be forgotten. May she rest in power among the stars and may her words echo for eternity. We love you Niki.