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| Meghan Schrader |
Meghan is an autistic person who is an instructor at E4 Texas at the University of Texas (Austin) and an EPC-USA board member.
In reflecting on what I think is the best ethic for our culture to follow in terms of safeguarding the lives and well-being of disabled people who could be at risk of assisted suicide, or who are experiencing other forms of extreme oppression, I find myself reflecting on the concept of family. My mental illness makes me very grateful for my family. For instance, I certainly wish that I had not had a manic episode in 2019, or relapsed into psychotic depression in 2020. During the latter episode I found myself ready to just give up-I didn’t feel that I could live with the constant screaming and the voice taunting me. I didn’t feel able to access any feelings of hope, and I did not feel that I could bear the impending blow to my health and life.
But, what happened when I reached out for help during that episode, and the one in 2019, gave me hope. During both of those mental health crises, my family rallied around me. Not just my parents, but my brother, his wife, and my cousin as well. Before those two episodes, only my parents had seen how sick I could get, and I used to have a lot of fear about what would happen to me after they died. I worried that if my brother and sister-in-law, and my cousin ever saw the depths to which my mental illness was capable of sinking, they would walk away from me. I used to struggle with mental images of myself on the street, eating out of a garbage can.
During my 2019 manic episode, though, I learned that those fears about my other family members were unfounded. When I realized I was experiencing mania and would probably wind up hospitalized, I called my cousin and my brother and let them know what was happening. My cousin, who lives in New York, took time away from her job and flew to Texas to be with me. She took care of my cat, even though she really, really hates cats. Being in the hospital is traumatic, and it was such a relief to see her standing there in the hospital corridor, waiting to embrace me. I was able to leave by the end of that week, but if I had to stay in the hospital for longer than that, my brother was going to take off from work and fly to Texas to take my cousin’s place.
Then, a few months later, as I slipped deeper and deeper into depression, my brother and sister-in law brought me from Texas to their house in Indiana. They paid for my train ticket and let me stay with them for a month. Also, my brother paid for me to see a counselor from a very high-quality counseling service that specialized in spiritual care for people with disabilities. My brother has more money than I do, but he isn’t rich, either. I’m sure that he had to make some sort of financial sacrifice to give that therapy to me, and the fact that he was willing to do that moves me greatly.
Unfortunately, though, nothing worked, and I found myself psychotic again. I engaged in some very disturbing behaviors. For instance, in my psychotic state, I told my poor parents that I didn’t really love them, I just thought that I did. That’s a very cruel thing to say. Also, I had to live with my parents during the relapse, and when we attended my nephew’s Confirmation, we stayed at my brother’s house again. During that time, I engaged in deeply disturbing behavior. I am not sure exactly what happened-my memories of the experience don’t always match my family’s-but I’m pretty sure that one of the things I did was gouge my brother’s wall with a pen, which meant that he had to repair his wall. And, of course, my nephew had to deal with seeing all of that while he was trying to celebrate this important event in his life.
However, my family treated me with deep mercy. After the episode passed, I texted my sister-in-law to ask how I could apologize to my nephew for my frightening behavior. She texted back, “Your behavior did not frighten him. He totally understood your mental illness and is very compassionate about it. He loves you a lot. The best amends to make is to love yourself as God does.” Shortly after that, I had a Facetime meeting with my brother, and he talked about what a good person he thought I was and reminded me of all the good things I had ever done in my life. It means a great deal to me that even after seeing me at my worst, my family would be willing to see the best in me. I wish that my family and I hadn’t experienced all of that, but seeing the way they responded gives me hope and peace.
Unfortunately, not all families respond to mental illness or disability in that way. I have met people at NAMI meetings whose families won’t talk to them because they’ve tried to die by suicide, have fallen into addiction, etc. And, utilitarianism, which is driving a lot of social policy right now, doesn’t really encourage people to put resources into helping broken and difficult individuals. The fact that Canadian ethicists recently published a treatise talking about how great it is to euthanize homeless and low income disabled people at the end of their rope is just a very extreme consequence of a culture that wants to throw broken people away.
Having observed my own family’s response to my struggles with mental illness, I think that the best solution to a climate in which disabled people are regularly encouraged to die by suicide is for those of us in the disabled community, and in the human community more generally, to be each other’s “family.” This isn’t a new idea. The concept of chosen family is common in marginalized communities with many members who have experienced social rejection, and rejection from their immediate families. People tend to need close knit communities of people who share their specific experiences, who can help them problem solve about how to address their shared needs; the concept of chosen family is tied to that effort. More broadly, though, I think that an ethic of chosen family is particularly critical in regard to forming disability rights policies. Right now, people with disabilities are often viewed as using copious resources that would be more equitably spent on other things, and they are seen as an emotional drain on the people around them. Disabled people’s rights are simply ignored by society while it busies itself with doing other things. If our culture decides to love disabled people like we are part of a “human family,” society will be less likely to embrace a utilitarian perspective about disabled people’s human rights and make the changes necessary to for the world to be hospitable to people with disabilities.
And, regardless of what laws are passed, we in the human community can step up for each other when society fails. We can make whatever sacrifices we can, and show the generosity that is necessary, to love the most marginalized members of our communities like they are our parents, our children, our cousins and our siblings. By embracing an ethic of “chosen family,” we can help the most disenfranchised members of society keep walking with us together, away from death, darkness and precarity, and towards abundance, life and light.
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