They say time heals all but it is truly action that sparks positive change. In the realm of activism, we are motivated by this basic principle. To bring about change in the world and within ourselves, it takes a great deal work. Often times it means fighting through pain and grief, finding strength we did not know existed. That is the reality I’m living every single day, both personally and as part of a larger community. First Lady Michelle Obama recently remarked in an interview with Oprah Winfrey, “We are feeling what not having hope feels like.” Being a disabled activist has taught me that sometimes we must create our own hope through resistance.
Many in the disability activism community are sharing a similar sense of aguish as 2016 comes to close. Whether it be from the loss of someone close; a personal trauma or setback; the passing of a disabled role model, leader or person in the news. The passing of people like Carrie Fisher and all those who were lost to police brutality, ableism driven murders and lack of resources. Even the fear and uncertainty of the looming Trump presidency has brought about a sort of collective grief. Everyone’s grief is valid and important, however, we all experience it differently. My own emotional pain can be overwhelming at times.
On November 21, my younger brother Andrew passed away at the age of 22. I lost my best friend, my partner in crime and the biggest influence in my fight for disability rights and personal acceptance. Sharing the same degenerative illness, we had a level of understanding for each other’s experiences that very few ever get. He was the first other disabled person I had ever known, we truly helped each other find our sense of identity. He taught me to love myself, oppose pity and resist the limiting idea of “normal”. Not a moment goes by that I don’t miss him. The pain of this terrible loss is so still raw, each day a new stage of grief unfolding.
Grief is not a finite segment in time but rather an active process, shifting from one moment to the next. Everyone has their ways of coping, their own process of healing. For me, staying involved with the causes most important to me is a coping mechanism. Despite having, what feels like, a massive hole ripped in my life, I have chosen to fight on for what I believe in. I persist not because it’s easy to do but because it gives me focus. Resistance does not erase pain, it simply channels it into action. We may not be able to change everything that’s happened but we can still change the world for the better.
That being said, activism must go hand in hand with self-care; taking care of one’s own needs is a form of resistance unto itself. This is certainly something I find easier to preach than actually practice. My brother often reminded me to, as he put it, “Not neglect my own mental hygiene and physical health.” The times when I found myself feeling somewhat battered by activism, Andrew would be a little disappointed, much like Alfred is when Batman gets his ass kicked. My brother supported and fueled my passions but also understood the importance of self preservation in times of turmoil.
No matter what each of us are facing, we all have value. The biggest lesson that Andrew ever taught me was that compassion is infinitely important, for others and for ourselves. The change that we seek as activists is predicated on the actions of people, not simply the passage of time. Progress, whether it be societal, political or personal, is working to make tomorrow better than today. Activism in a time of grief is not about beating the storm, it’s about surviving it.