Hannah Soyer is a creative nonfiction writer and journalist. Her work focuses on underrepresented groups, under-talked about things, and how these fit into the idea of the “other.” She has written for the Disability Visibility Project, Rooted in Rights blog, and Cosmopolitan (among other various publications).
She is the creator of the This Body is Worthy project, which aims to celebrate and represent bodies that are outside of mainstream beauty ideals. She is also the founder of Freedom Words, a program to design and implement creative writing workshops specifically for students with disabilities.
Because of her advocacy work in the disability community, NMD United was super excited to interview Hannah about life with NMD, access barriers, and what independence means to her.
We asked Hannah six questions, and these were her answers.
What is your favorite living with NMD life hack?
Well, I'm going to have to say learning to not give a f*ck about what people think. Part of this includes developing a healthy level of assertiveness and intimidation when dealing with people who think they know more about my body and disability than I do (ie, doctors and insurance companies). If I'm able to share an NSFW life hack, definitely tying a string around my vibrator to prevent dropping it.
Are you inspirational? Why or why not?
It depends who's being inspired. I don't mind being inspirational for other disabled individuals or parents of children with disabilities--I feel that part of my responsibility is working to better my community, and so if I am able to be a representation for other disabled individuals I am more than happy to do so. If able-bodied individuals find me inspirational, though, I'd encourage them to question why they feel that way.
What's the best and worst part of living with an NMD?
Best part: being a part of one hell of a community and getting to meet so many amazing people with disabilities similar to mine. Also, having a perspective on life and society that allows me recognize ableism and how it functions.
Worst part: Dealing with both overt and implicit ableism.
What quality of life issue do you feel most impacts our community's ability to sustain or gain independence? Explain.
This is ultimately a complex issue. On the surface, I'd say the biggest barrier facing the disability community is access, which can mean many different things, including employment opportunities, healthcare, transportation, and physical access to buildings.
If I had to narrow this further, though, I would say our biggest barrier is not being given adequate hours of attendant care. Realistically, I need around the clock help in order to live independently, go to school, work, and participate in/contribute to society. Because I am currently in graduate school, I get funding for my personal care attendants through Medicaid and Vocational Rehabilitation Services, which (almost) covers all of my hours. Once I graduate with my Master's and start working full-time, however, my Voc Rehab funding will be cut, and I'll be down to the approximate 7 hours of care per day through Medicaid.
Supposedly my future employer is meant to provide me with the supports I'll be losing from Voc Rehab, but I'm unsure of how that's supposed to work out. Is an employer really going to pay for someone to come in and help me with all of the things I need help with? Or am I just supposed to rely on my coworkers to help me use the bathroom, eat, get to and from places, etc.? Of course it's not that simple--the reason disabled individuals have so little funding for attendant care is because laws have been written to make sure as little government money as possible is being used to allow us to live independently.
What does independence mean to you? Explain.
Independence means having autonomy over my body and my life. It means being able to choose where I live (ie, not in a nursing home), who I hire as personal care attendants, and where I work (ie, a job I have the skillset for, not just a job that is "accessible"). It means being able to travel from one place to another via accessible transportation, whether that be fully accessible public transport systems or a wheelchair accessible van (or, I don't know, airplanes that can actually accommodate wheelchairs?). It means being able to marry without losing my SSI or Medicaid benefits. It means being able to decide whether or not I want a cure or treatment for my disease without being pressured one way or another by a culture and society that values able bodies and able minds above everything else. It means, ultimately, recognition of how ableism is ingrained in our society and working like hell to change that.
What would you say to your 13 year-old self about living with NMD?
13 year-old me was so incredibly insecure in my body and my identity. I mean, I think most 13 year-olds are, but body image and self esteem issues definitely affect disabled teens on a whole different level than nondisabled teens. I'd like to tell my 13 year-old self to not give up, and that there is absolutely nothing wrong with me or my body. I'd tell myself my favorite living with NMD hack: stop giving a f*ck what people think.