Unrest Documentary: Millions Missing

Unrest is a documentary, made by Jennifer Brea, who is a woman that has Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. In her documentary she shares what her experience with M.E. is like, as well as others experiences within the community. Unrest is a though provoking and heartbreaking film. Jennifer Brea shows the good, the bad, and the ugly, but more important she gives the viewer an honest and raw look at what it is like to live with a severe chronic illness.

 

This was definitely not an easy film to watch for many reasons, one being how it drew on my own experiences, and another being how well is shows the injustice disabled people face. Brea started an event called, “Millions Missing,” to raise awareness for myalgic encephalomyelitis. Tomorrow, May 12th, is the third annual Millions Missing protest, that aims to reach “increased government funding for research, clinical trials, medical education and public awareness.” You can become involved in the protest by going to a location near you and protesting or by letting them know you will be protesting virtually.

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I am impressed with how accessible they have made this protest. Activism in general can be incredibly inaccessible, and seeing steps like these made in order to let anyone who wants to participate be a part of the event is truly amazing. Of course this is on their minds due to the whole event being about disability, but I hope to see others follow in their footsteps when it comes to making protests accessible. Jennifer Brea is a great example of what we need the leaders of disability activism to look like. She is disabled, unapologetic, and keeps others needs in mind when planning events. She also is dedicated to sharing more voices than her own, which is so so important. The disability experience is vast, and differs from person to person even when they have the same illnesses.

Millions Missing is the perfect name for this protest. It really shakes me up to think about all of the wonderful people who are “missing” from a regular life due to illness. I personally have dealt with this, being “missing” due to being mainly homebound. It’s incredibly isolating and lonely but events like this really help. Our stories are worth sharing and people should be aware of our lives. Thank you Jennifer Brea for contributing much an amazing movement!

 

 

 

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Reblog- Healthcare Access & Disability

I wanted to share this post from Trailblazing with CP about disability culture, and disability-inclusive healthcare. Amelia does an incredible job of articulating the importance of disability-inclusive healthcare, and how the social definition and medical definition of disability affect how she views her experience as a disabled person.

Access to good quality, disability-inclusive healthcare is a hot topic these days in the disability community, and for good reason. It’s hard to find. A lot harder than you think. Why? Well, a multitude of reasons, honestly. In my opinion, it boils down to a lack of adequate disability awareness training in medical school, a […]

via Healthcare Access & Disability — Trailblazing

Watching Your Family Members Age

Last year my Grandmother was diagnosed with Late-Onset Alzheimers. She is now 77 and her memory has gotten significantly worse in the past few months. Recently, she forgot to take her blood pressure medicine for two days and ended up in the emergency room with crazy high blood pressure. Watching your family member age is not an easy thing.

My mom is having the hardest time with it, and rightfully so as she is her daughter. I’ve never been very close with my Grandparents, so while it is sad and hard to see her struggling, it doesn’t affect me the same way it affects my mom. Her condition became much more apparent to us after my mom visited her a few weeks ago. My Grandparents volunteer to lead a church service at a nursing home in their town and since my mom was visiting them, she went with them to help. My grandmother can no longer play the piano, because she’s forgotten how, but she also forgets that she can’t play anymore. She gets really embarrassed when she tries to play and then realizes she cannot do it anymore, which unfortunately happened on Sunday. She also introduced my mom to the same person three times, one of which she introduced my mom as her son, and my grandmother only has four daughters.

We try to remember that 77 is quite old, and is lucky to have made it this far before the Alzheimers became a major issue. My Grandfather, who is 78, does a great job of taking care of her, but he is also old and is just beginning to deal with some typical forgetfulness that comes with old age. It’s become clear they may need extra help sooner rather than later. I feel like people don’t talk about how difficult dealing with aging family members can be and how difficult it can be one those who are aging, but maybe that’s because people my age tend to not to have to think about that.

Although the validity of the testing has been questioned quite a bit, I had genetic testing through 23&Me done about six months ago (My PCP wanted me to do this to see if I had a certain gene that affects how you metabolize medications, but that’s beside the point). Nothing too interesting came out of it, but it did say I had an increased risk for late-onset Alzheimers. It’s not shocking, but it’s also not something you want to happen. It actually freaks me out more that my mom might get Alzheimers than it does for me to get it. I’m used to having health issues (and I won’t be old for like a reeeeaally long time) but I just can’t imagine her forgetting who I am. That’s a scary thought. However, there’s no need to fret about that now since it’s not happening in this moment.

I do worry about my Grandmother, and my Grandfather. I know it kills him to watch her slowly slip away. They’ve been married for nearly 60 years, and have been together since they were 18. She’s obviously struggling too, but she doesn’t notice when she tells the same story repeatedly or recognizes someone incorrectly. In some ways it’s better that she doesn’t know for her sake, but it only makes it more heartbreaking to think about for everyone else.

I’m learning aging isn’t  fun for anyone involved.