Nichole Nettleton on Differently Abled Friends and Allies
Nichole Nettleton is an Ithaca Friend with autism and physical ailments. For the last year she has been offering weekly support meetings over Zoom for Differently Abled Friends and Allies (DAFA), a working group under the care of New York Yearly Meeting that provides safe and supportive space for people to share and learn from each other’s experiences, to grow in community, and to spread awareness.
CB: In the behavioral health peer movement, we talk about “person-centered language” when discussing our concerns. How does that apply to people with other disabilities?
NN: People can use all the right words and not know what they really mean. I come across that a lot. I’ve been in meetings where medical providers use the right language because patients are present, but the providers are making all the decisions and not giving patients control. It’s not words that offend me but the intention behind them and how they are acted on.
I haven’t had a great experience with the healthcare system, although I have been helped by some great people. My stay at a local hospital was so upsetting that I asked the director of behavioral health if I could do a video presentation for the staff. But even after two tries, my anger was still apparent; I couldn’t find a doctor to sponsor me for fear of upsetting colleagues. Instead I have asked Patch Adams to speak to DAFA about integrating behavioral and physical health in hospital settings. Adams is trying to establish a hospital that does just that. [Hunter “Patch” Adams, portrayed by Robin Williams in the film Patch Adams, has been affiliated with the Ithaca (N.Y.) Health Alliance and Ithaca Free Clinic near where Nichole lives.] Until I was diagnosed with autism last October, the doctors did me more harm than good: accusing me of lying, being manipulative, and psychotic, but now they understand me better. Still I’m concerned about how when doctors don’t understand patients they accuse them of being mentally ill.
The book Patch Adams sent to Nichole Nettleton (left). The inscription reads: “For Nichole, Chase your wildest dreams. In peace, Patch.” (right).
CB: What other conditions do you live with?
NN: Bipolar disorder, complex PTSD, dissociative identity disorder, and functional neurological disorder; plus, a long list of medical conditions, including autoimmune issues, thyroid problems, and diabetes.
CB: How have you managed?
NN: For 14 years, I didn’t. Then I discovered my allergy to gluten. Within a month of ending my intake of gluten, I felt better. Unless I am dealing with a flare-up of any of my conditions, I don’t pay attention to them because I’m too busy doing things.
CB: How are mental health and medical conditions related?
NN: You can’t separate the two, as our medical system tries to. The exception is when I have to see a neuropsychologist for my functional neurological disorder. But after 16 years of being misunderstood, I’m wondering if mental illness really exists—a subject we will talk about in future DAFA meetings.
CB: What are the symptoms?
NN: Seizure-like episodes, trembling, paralysis. Some people experience blindness. The seizure-like episodes, called “psychogenic non-epileptic seizures” or PNES, are the worst. As a result, I can’t ride public transit because I don’t have a companion to go with me. Sometimes I have migraines that last three to four days and land me in the ER. These might be part of the condition, but they can also be a feature of autism. Additionally, I become catatonic at times. The PNES and catatonia especially stand in my way at the moment; I’m trying to figure them out.
CB: How do you cope?
NN: Keeping busy. I like to do so many things: hydroponic gardening in my apartment; now I’m planting outside; learning languages on my phone using Duolingo; math; helping people. I work part-time as a home health aide to a neighbor. I started school in August for my master’s in English and creative writing. If I can get the seizures and catatonia under control, I would like to teach. If not, write about my experiences using fiction and poetry.
CB: How are you doing?
NN: So much better than two years ago, now having clearer diagnoses and better coping skills. My sister figured out my gluten intolerance because she and my mom have it. When she first told me, I didn’t put much stock in it, thinking it was a fad. However, my blood sugar has dropped, my body absorbs nutrients better, and I have less inflammation. I think better, have more energy, and can function again. For 14 years, I was in agony every second of every day, and I was told it was a mental health problem. Unfortunately, I gave up gluten all at once, and withdrawal was like stopping opioids cold turkey. I felt like I was dying for the first three weeks. No one told me, nor did the doctors know.
CB: Where did you get the idea for Differently Abled Friends and Allies (DAFA)?
NN: I didn’t start DAFA. I was looking for support and someone at my meeting told me about it. I got in touch with the person running it, but that person was no longer active. Since I saw it as a major need and I had a lot of experience with disabilities, I thought I could help by setting up weekly Zoom meetings on First Days at 4:00 p.m. People can contact me at firstname.lastname@example.org to receive a link to our virtual gatherings. We started about a year ago, and though I don’t know much about facilitating or the technology involved, I’m learning as I go. Sometimes you just have to start things when the need is there. You can’t be afraid that you don’t know enough or think you’re good enough to lead.
CB: Is the group part of New York Yearly Meeting, or is it for everyone?
NN: It’s a subcommittee of New York Yearly Meeting’s General Services Committee, but anyone interested in Quakerism can participate. I’m in touch with the General Services clerk and communications person. I’m also talking to the Young Adult Friends director, who is helping me with the tech by creating a listserv of topics we cover. I have been encouraged by participants saying they have gotten a lot out of it, but not many have attended so far. It’s partly, I think, because there are many competing activities at the time we meet. Also, the notion of “differently abled” members might put people off because they think “that’s not me.” The “allies” part means the group is for everyone because we live in community and will encounter people with disabilities sooner or later. I want to reduce the awkwardness of talking about these concerns.
CB: What are the meetings like?
NN: We explore different topics related to disabilities, such as the pros and cons of different terminology, lack of accessibility in public places, or laws about accommodations in school or in the workplace. Someone may present more information on specific disabilities, such as autism, cerebral palsy, or invisible disabilities. We may share our personal stories, whether they are positive, negative, or anywhere in between. People might want to discuss starting up their own projects for addressing disability-related needs they see in their community. These are what the group does.
Our purpose is to break down barriers between people, whether it’s between someone with a disability and someone who does not have a disability, or two people who have disabilities but do not know much about each other’s disability. This meeting is about helping people genuinely connect to one another, and not letting disabilities stand in the way.
The ground rules are Friends will try to use “authentic language,” try to “listen in tongues” while sharing our stories and experiences, and not make persuasive arguments or defend our viewpoint. We start with a warm-up and silence. Then, the first half is confidential, and the second half is sharing what people will take back to their homes, work, and communities. We don’t want this to be an isolated exercise. This group is not just about what you get out of it but how you share that with other people. I start with a topic, but things are so interlaced it’s hard to stay on one alone. For example, a discussion about accessibility can lead to advocacy and coping skills.
CB: What messages from the Spirit, testimonies, and witnessing are involved? Do you talk about how people’s spiritual journeys have affected their disability journeys?
NN: Your spiritual view is your worldview. We incorporate all of these. Because the groups don’t go as I plan, I feel they are Spirit-led. They always turn out better that way.
CB: How would you describe your spiritual journey?
NN: My ancestors on my father’s side were Quakers and Mennonites, but I wasn’t raised a Quaker. When I studied in England during college, I went to Quaker meeting for the first time and continued when I returned to the University of North Carolina at Chapel Hill. I’ve also attended Poplar Ridge (N.C.) Meeting and am now a member of Ithaca (N.Y.) Meeting. The Spirit affects my whole outlook. And DAFA speaks especially to the testimonies of equality and community.
In high school, people complained about being different. They formed cliques: sitting together at lunch, creating a wall of protection that didn’t let other people in. I don’t want this group to be a clique. We talk about accessibility, advocacy, and coping skills; we share resources and culture. Based on my autism, I can model best practices and hope others will share their experiences. I would like to get the group to the point where they don’t need me to initiate things.
Having a disability and being disabled are different. I was disabled for 14 years, but now I am doing things again. In August I attended a developmental disabilities camp that includes my autism, a camp run by the Presbyterian Church. They have a lot of incorrect assumptions: such as assuming you live with your family or in a group home, and that the person filling out the application will be a parent or caregiver. I live independently and make my own decisions. They are trying to be helpful, but they need to work on understanding the spectrum of needs.
CB: So does that mean you want to stir things up?
NN: Stir things up and have fun, too. Just by being myself, I stir things up. What I have learned from DAFA is that a lot of people are sitting home alone mulling over their stuff and not realizing there are others out there thinking the same things. Why not be alone together? Let’s stop putting up barriers between ourselves. People think they just have to put up with the medical system as it is, but that’s not how it has to be. Change is possible. We can make things more real, meaning providers and patients can be more honest with each other. Now it’s like eating wax fruit instead of something nourishing. To me being a “professional” is synonymous with being fake. Doctors need to be respectful, accountable, and treat us well—like the human beings we are. You can’t manipulate people into doing the right thing. They must be “led” to do it [in the spiritual and psychological sense]. I try to model how I want them to treat me by being honest and open with them. That’s how you gain collaboration.
CB: What was growing up like?
NN: I started college at the University of North Carolina in 2004 and lived on campus. It was kind of like a fairy tale because the living conditions were much better than I had ever experienced before. Some students complained because they had to put up with a roommate. They had never lived with seven people in one small bedroom, or in a tent in the middle of a New York winter. People talked about the “freshman 15”: the extra weight students gain because they aren’t living at home and so tend to eat pizza and junk food. For the first time in my life, I had regular access to healthy food. I was also geographically distanced from family drama. It was great.
In 2007, I got sick with Rocky Mountain spotted fever and had to leave school. I lived at a not-so-reputable hotel with my dad. When I was well enough to return to school, I had episodes that looked like seizures. I was made to leave the dorms because my seizure-like episodes were considered a liability. They gave me one week to find a place to live, assuming that I would just go home, that I had a home to go to. Someone at the Chapel Hill Meeting told me about a friend who was looking for a roommate. I stayed with her until I had to withdraw from school again. I kept trying to go back and finish but did not actually graduate until 2016.
Nichole’s chicken soup: one great way to sneak more veggies into her neighbor’s diet (left). Tomatoes in Nichole’s garden (right).
CB: What are your passions and ambitions?
NN: I want to get my chaplain certification because I earned a bachelor’s of divinity from Christian Leaders College. I like to learn, garden, teach, cook, and bake (gluten-free bread of course). I cook for a next-door friend who needs more fruits and veggies in her diet.
CB: Who are your role models and cultural icons?
NN: Patch Adams and his Gesundheit! Institute, and John Greenleaf Whittier’s poems. The movie Martian Child is about how parents should raise children with disabilities; the Oscar-winning A Beautiful Mind; psychologist Tony Attwood is good on autism; and the movie Pollyanna is good on disability in general (I love the actress Hayley Mills). JJ Heller’s music is great; she’s a Christian artist who writes songs for her two daughters. They aren’t specifically about disability, but they are filled with Light. They are about how to look up rather than down when you’re struggling.
An Interview with the interviewer, Carl Blumenthal