Lipstick and Liberation: Caring for Jennifer, a Transgender Woman With MS

Originally published by The Mighty: https://themighty.com/2019/07/supportive-caregiver-transgender-disability/

Sitting on a small patio in a Midwestern suburb, I scooted Jennifer’s wheelchair close, held her hand in my palm and painted her fingernails a hot pink, after scrubbing off the turquoise with nail polish remover — pressing each finger straight at the knuckles. Her eyes were closed as she basked in the warm sunshine.

Jennifer is a transgender, quadriplegic woman who uses she/her/hers pronouns. For 16 years, I was her direct support professional, the technical term for paid caregiver. When I started, I was a 21-year-old struggling single mother of a little girl with cerebral palsy. Jennifer was confident, charming and educated, with gray hair that was combed into a wave that swooped across the top of her high forehead. She wore polo shirts and tortoise shell eyeglasses with multifocal lenses, and looked every bit the high school teacher she had been.

Life was tough for me, raising my daughter without much support, managing all of her doctor and physical therapy appointments and endeavoring to pay my bills. Jennifer coached me on getting my finances in order, dealing with my chaotic housing and putting my daughter’s deadbeat father in the hot seat. She encouraged me to keep alive my dream of graduating college with a GPA that would make me competitive for graduate school. Every time I had a deadline or exam, she cheered, “Give it to ‘em!” as I left her house to go study.

But our conversations weren’t one-sided; she enjoyed regaling me with stories about her college days in the 1960s, which she called, “The best four years of my life.” In her early 40s, she had been diagnosed with multiple sclerosis. The first sign was double vision when she was running on a California beach one morning. Within a few years, she became paralyzed from the neck down and was living in a nursing home.

“I just love being Jennifer,” she said, without opening her eyes. She had been going out more as Jennifer, and I accompanied her. For the Pride Festival, she dressed in a long white shirt tied in front and Daisy Dukes, her bare feet adorned with several anklets and toe rings. Nobody asked any questions, and neither did anyone at her physical or occupational therapy sessions the week before. But when people did, like the suburban moms who suggested to her that she was inappropriate, I stated, matter-of-factly, that she liked wearing these things. That was what Jennifer told me to say and she trusted me to advocate for her. I was her sidekick.

She lived with her mother, a feisty former socialite in her eighties who doted on her. Although they didn’t go out often, because it was just too difficult with getting everything ready, packing up the car and simply being away from home, they were still members of their country club.

Every morning, I transferred Jennifer from her hospital bed in her living room by pulling her up into a standing position and pivoting her toward her wheelchair to sit her down. Jennifer had put on some weight since she was immobile, and I was on the smaller side, but it was a skill I was able to master because we were a team.

Throughout the day, I handled many details for her: hygiene, eating and drinking, scratching itches, moving her body to her liking, helping her pee, covering and uncovering her with blankets, wiping her nose and changing the television channel. I was in a constant state of motion as I assisted her with everything she would have done for herself, but now couldn’t.

At doctor appointments, I was not only transportation and muscle to get her in and out of the car, but someone educated in medicine who could translate the lingo for her and help her make informed decisions.

We were used to the looks, the rudeness and the pity that came with being a disabled person in this country. To cope with all the hostility, we went out anyway (planning ahead for the logistics) and didn’t care if anyone had a problem with it.

Despite the intimacy of our relationship, there was a lot I didn’t know about Jennifer, and gradually, she revealed details about her life that she had not disclosed to anyone. It started with her telling me stories about a time she lived in Las Vegas in the 1970s — escapades of a stripper who performed for an audience as a femme. Her eyes lit up as she recalled her fishnet stockings, eyeliner and high heels, and how the crowd would cheer when she worked the pole at Al’s Cabaret, dancing to her favorite song, “Love’s Theme.”

“Do you think I’m strange?” she asked me.

“Of course not,” I validated. “It’s normal.”

I had grown up in a religious sect with a lot of rules: no makeup, piercings, dancing, movies, television, popular music or friends outside of the church. Of course, no homosexuality — much less being transgender or queer. But since leaving when I was 18 and moving out on my own, I had begun to embrace not only myself, but others the church had told me to avoid. I had partied at gay clubs and shaved my head and rejected any notion that God existed or that I should follow what any man told me to do with my life or body.

With my reassurances that she wasn’t a creep, Jennifer let me further and further into her old life.

“I had real boobs in Las Vegas because of estrogen pills and shots and testosterone blockers. I loved it,” Jennifer said. She described how she got into stripping: starting with nude modeling for an art class at a community college near home and strip-o-grams when she got to Las Vegas after taking a leave of absence from teaching. A transgender dancer at Al’s Cabaret inspired her to see a doctor and begin to transition.

But when the 14 months of leave were over, she stopped taking estrogen and testosterone blockers and returned to teaching. After a couple weeks, her breasts had deflated, but underneath where they had been, white lines remained. She wasn’t ready to disclose who she really was, not while her mother was alive, admiring her “perfect son.”

As she told me stories while reminiscing on her secret life, she shared her desire to to be out as Jennifer, if there was a way.

Since her hands were too swollen from MS to wear rings on her fingers, she compensated with other over-the-top jewelry. I showed her the best sites for online shopping to buy flashy clip-on earrings and smoky eye makeup and helped her complete transactions. She asked me to store her purchases in a safe. I took pictures of her hair as it got longer and what it looked like in the back when I put it in a ponytail. I held her hands up for her to see how her fingernails were growing out.

“You sexy lady,” I complimented her.

“You can call me a queen,” she whispered hoarsely, winking.

Then one day, as we surfed the Internet, she asked me to look for nudist resorts. Being warm helped her muscles relax. We found one that advertised all the amenities Jennifer liked from her former life: spa, restaurants (even though she was on tube feedings now), nightclub, and a tropical poolside setting. Jennifer offered to pay me a travel rate per day and cover my expenses. For about a month, I considered whether it would be feasible for me to go with parenting and other obligations. I had my B.A. degree now and was building my career in public policy, but still needed my “day job.” My daughter was thriving academically and taking violin lessons. I resolved to make the trip work because it would make Jennifer happy.

Once we got there, it was surprisingly liberating. People were walking around nude like it was normal and laughing with each other and playing volleyball in the pool. Some were at the bar, sitting bare-butt on towels and sipping cocktails like they were in their own living rooms. Jennifer’s face was ecstatic, like she had found her new Vegas. After getting checked in and putting our luggage in our room, her first request was to strip her down. I had seen her naked every day. But I kept my clothes on. Even after getting many piercings, having multiple sex partners and generally telling society where to go, keeping covered up was a remnant of my strict upbringing I held onto.

Within the first few days, I painted Jennifer’s nails and let her wear my lipstick. Although reticent, I finally — self-consciously — sat by the pool with her in a bikini she had helped me pick out online. We developed a routine: mornings sunbathing by the pool and chatting with newfound friends, afternoons napping, and evenings watching karaoke or a live band in the pool bar or mingling in the nightclub where guests (who were about her age) flaunted kinky outfits and danced to hip hop and retro music. Wherever we were, I parked Jennifer in a strategic location, so she could participate in the action as much as she wanted to.

When we got back, she told her mother that she had won a trivia contest and the prize was a mani-pedi. She had offered it to me, but I told her she should do it. Jennifer’s mother didn’t question the story, nor did she protest when Jennifer began to regularly have her nails painted.

The trip to the resort became an annual event, and with each visit, Jennifer gradually emerged — from pretty manicures and lipstick to eye shadow and lingerie, and finally, a blonde curly wig and silicone breast forms placed under a bra. My daughter graduated from high school. I became more comfortable in my own skin. Each time Jennifer returns, she brings more of herself back home. And we sit on her patio in the northern sun, painting our nails and showing off our beautiful bodies — to ourselves.

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3 Rules – Disability Etiquette

Etiquette is a part of life wherever we go, and it depends on context. How we behave in one situation can be different from how we are in another situation. We follow etiquette when we socialize, talk to our bosses, and go to the doctor. It can include cultural sensitivity. Using disability etiquette is important for respectfully interacting with disabled people. Here are 3 simple rules:

  1. Boundaries: Disability information is personal, sometimes medical, information. Just as you wouldn’t ask someone personal questions, like how much money they make, it is inappropriate to ask someone about their disability. Asking questions about someone’s disability is invasive and crosses personal boundaries. If someone wants to offer information, that is their choice. But it’s not OK to ask someone questions like, “What happened to you?” or “What’s wrong with you?” Imagine if someone else asked you the same thing and how uncomfortable you would feel. Also, everyone has a different comfort level with sharing personal information. Some people may say that they invite questions – however, that doesn’t mean that it is fine to approach other people the same way. Everyone has their own preferences. ‘Disability disclosure’ is sensitive. Professionals and others are not permitted to disclose a person’s disability. This is unethical. The rest of the community needs to learn more about disability etiquette, and with increased awareness of appropriate boundaries, we can be more effective and respectful.
  2. Equipment, services, and accessibility: When a disabled person uses a wheelchair or service animal, those are extensions of the person that may not be touched without permission. Don’t push someone’s wheelchair without permission and don’t pet service animals (they are on duty). Treat the person’s equipment as part of the person’s ‘bubble.’ Don’t pick up equipment either, such as a communication device. Out in the community, it is important not to create additional barriers for disabled people. Even if you are only going to be a minute, do not ever, under any circumstances, park in designated disability parking spaces. It is an act of discrimination because it makes it harder for a disabled person to access the community. It’s also arrogant and a slap in the face to disabled people, who already deal with enough barriers when trying to participate in life like everyone else. Don’t block disability entrances or door buttons or ramps. And if you use a public restroom, make sure to leave the disability stall available for use. Try to be aware when you are out and about and be open to hearing how you can be a community member who promotes accessibility.
  3. Helping, supporting, and assisting: You may tend to be a helpful, caring person who likes to assist people. You may be a nurturing type, and that’s great. But using disability etiquette, you will not assume that someone needs help unless you are asked. There are some situations when you may ask someone if they need something – for example, if someone is in danger or a crisis. Under ordinary circumstances, resist making assumptions about the person and what they need or want assistance with. If you are going through a door and someone is right behind you, you can hold the door just as you would for anyone else. If you see a disabled person approaching a door, let the person manage it on their own. It may seem to you that someone is struggling, but maybe that is how the person does things. It may look difficult to you, but is fine for them. One way that we can be more supportive is to be aware of our privilege. We don’t decide for someone else, without our privilege, what is best for them. Disabled people have agency over their own lives and it is not your job to act like their caretaker. It’s condescending and patronizing. So to be most respectful with appropriate boundaries, be courteous, but wait to be asked for your help.

There are many more disability etiquette topics. Hopefully this was informative and food for thought. There are lots of articles online to learn more like this one from the United Spinal Association. 🙂

10 Things You Need to Know About Ableism

Ableism is a term that many people have not heard before. Like all the other -isms (racism, sexism, etc.), it means discrimination – in this case, toward disability. Ableism assumes that being ‘abled’ is the standard, so being ‘disabled’ is inferior. Ableism, like all the other -isms, is complex and hard to understand. But it is rooted in oppression of disabled people. (And I use ‘identity-first language,’ since many self-advocates are starting to prefer that.) There are aspects of ableism that even seem nice! That’s why it can be deceiving, subtle, and perhaps ironic. So here are 10 general things you need to know about ableism:

  1. Pity: Many of our perceptions of disability are based on pity. Often the first reaction to hearing about a person’s disability is grief or regret, or even fear. We have been socialized to consider disability a misfortune or something unwanted. Often, when a baby is born, we hear, “He/she is perfect and has all his/her fingers and toes.” That is sort of an ableist statement because the value is on having a proportionate body. That thinking is extended to our minds, as well. If someone doesn’t fit the prescribed template of what is deemed an acceptable human being, then it is viewed as problematic. We don’t want your pity, though. Gillette Children’s Speciality Healthcare, a major provider of healthcare services to disabled children and adults, created a “Cure Pity” campaign that was aimed at tackling the real barrier: pity. Sure, disabilities can mean obstacles and struggles, but many of them are societal. We can focus on problem-solving and working toward solutions, rather than pitying the individual for being who they are – a full person. We can focus on the social model and address community barriers, instead of treating people as less human.
  2. Tragedy narrative: This is very related to pity. The tragedy narrative is a pervasive, negative story about disability that treats disability like it’s bad. How would you like to be told every day that what you are is tragic? These are messages that get internalized and create social barriers to independence. Instead of thinking of disability as a tragedy, we can reframe it as diversity. It is a normal part of life. Disabled people can and do live great lives! That may surprise some people. Living with disability, my reality is different from how it may look on the outside. Focus on the abilities of the person. And keep in mind that what we value is taught. We just have not been taught much about disability that is accurate. We will live better lives with better understanding. We may need to reject what we have been taught.
  3. Inspiration porn: This is a term that raises eyebrows, because, “porn.” Good. We need to call it what it is. And what is it? This is when disabled people are portrayed as inspirational things, or are objectified for ableist delight. Often in the media, a disabled person will be glorified for something ordinary, as though nobody expected anything from them. If people think you can’t do anything, then of course they will be impressed when you do something basic, like leaving the house. Yawn. How about applauding something actually meaningful, like accomplishing something significant, not just breathing. It is also media representations of people that cast disabled people as dependent on abled people. It’s not disability advocacy to perpetuate disability tragedy stereotypes like helpless, broken victims who need to be saved either physically or spiritually by a non-disabled person acting like a hero. Think about the juxtaposition between disabled and non-disabled people in these scenarios. Disabled people are not objects, props, or tokens to make you look good. We are not special angels or people born to teach us about love. We are every bit as human as anyone else. We deserve respect on our own terms. You don’t need to take us to prom or let us score the winning goal. We’re good. If you want to hold the door for someone, wait until you are asked. The hardest thing for people about this one is it seems so nice! But don’t be fooled. You don’t get to be the saint or hero at a disabled person’s expense. Be your own hero.
  4. Low expectations: Disabled people are underestimated constantly, and it is discrimination. Due to social programming, we don’t expect that someone who is disabled can do as much as a non-disabled person. I call ableism! If someone is physically disabled, assumptions are made about their cognitive abilities. So even if you are a little wobbly, people will also figure that you are mentally incompetent. Not that it’s a bad thing. We don’t understand our own humanity very well. Psychology is still a very new science, and it wasn’t long ago that we held all sorts of ridiculous notions about science. It’s no wonder that we don’t get it yet. IQ tests, for example, are way overrated. IQ does not equal intelligence. It’s one type of test that measures limited information. It’s like using a teaspoon to measure everything in the world. There are many cultural differences, learning styles, and types of intelligence. It is impossible to measure them all in a quantified way. Get to know people. We’re all talented and you can learn from everyone. Disability doesn’t mean inability.
  5. Compensation: This is related to everything on this list. When we feel sorry for someone, we may be inclined to compensate for what we think they are lacking. It may look like bending the rules, coddling, and making excuses. Basically, it looks a lot like enabling because we don’t want to add more burden to what we already feel is a burdened life. Hold up! Being disabled doesn’t mean that you live such a bad life that everyone around you should try to compensate for it. We don’t want freebies and passes because people feel sorry for us. We want equality and access. Everyone is working toward greater self-sufficiency, on their own terms. This means support and appropriate challenges that fit the individual, which should also be ‘self-directed’ or promoted by the person – at times perhaps with support or facilitation. Compensation is like telling people what to do – it takes away their personal power.
  6. Minimization: This is also related to everything on this list. Where to start, there is so much of this. Minimization is when we try to make something small. It goes hand-in-hand with invalidation (rejected, ignored, judged). A statement representing minimization and invalidation could be: “A lot of people have it worse than you.” That type of a statement is essentially saying that your problem is small and you are wrong to feel that way. That does not help the person at all – it’s demeaning. Perhaps the intent is to try to make the person feel grateful, but it says to the person that their disability experience is their fault. Some disabilities are mental illnesses, and that is the worst thing you could say to someone who is depressed, for example. It treats the disability as though it is something you can wish away, when it is a medical, physical condition – including those that are psychological. Have you ever analyzed a brain scan, like an fMRI? OK, then sit down. If you are not a medical doctor or clinical psychologist, specific to that individual, you are not qualified to tell someone what to think or do about their physical condition. Listen and learn, and don’t instruct. You’re out of your league.
  7. Tokenism: People are not things. That is all. Don’t treat someone like their disability is all they are.
  8. Over-helping: Compensation is related to over-helping because people sometimes feel like they need to do more for someone to make up for what they think they can’t do or would have a hard time doing. Don’t just tie someone’s shoes because you think it will take forever and you feel bad for them. Stand by if you are needed, but don’t act like a parent and start doing things for people that they didn’t ask you to do. How annoying! So what if it takes someone longer than you to do what they need to do. They are on their timeline, not yours. Chill.
  9. Poster child syndrome: Back in the day, the Muscular Dystrophy Association did telethons that exploited children with muscular dystrophy for the purpose of fundraising. Barf. They didn’t know better, but they just shouldn’t have. Jerry Lewis, you were better than that. It isn’t fair to make someone into a poster child for their disability type(s). It labels someone as just their disability when that is only part of who they are. It would be like referring to you as only your height or weight. It takes a whole, complex person and shrinks them down to a living stereotype. Please don’t.
  10. Lack of accommodations: The largest issue is the lack of accommodation – not the disability itself. A person with limited mobility who may use a wheelchair is held back by the lack of physical access, for example. Every one of us needs different types of community supports, whether or not we are aware of what they are. We just haven’t typically expanded support to accommodate disability. We change buildings now, like doorways and ramps. But not all disabilities are physical and some of the newest changes have been in technology and content development. Society has typically served a very narrow segment of the population and that is part of the reason that society is comfortable only with a subset of certain diversity spectrums. We can open our minds to consider much more variety of human experience. Then maybe we won’t feel so bad when someone else’s life is different from ours. Universal design is the future, so that we are being inclusive of disability on the front end, and not adding accessibility features as an afterthought. Who wants to be an afterthought? I thought so.

Pop quiz: what is ableism? Hopefully you will remember at least part of this list. And remember, listening, even with conflicting messages from various perspectives, is key to increasing disability understanding. Also, disabilities are all over the map from physical, cognitive, intellectual, developmental, and neuropsychological. You don’t have to be an expert, but you can show you want to make an effort to learn. Thanks for reading and making an effort! 🙂

Disability is Diversity

A lot of times when I tell people that my daughter has cerebral palsy (CP), they respond with all sorts of reactions and usually seem to feel really bad about it. One person recently meant to be nice, but said she basically wouldn’t be able to get out of bed in the morning if that were her. We actually laughed about it because it’s so far from our reality. Society unfortunately sees disability as a tragedy or problem, and that you can’t live a good life. That is so far from the truth. My daughter has had a great life. It has been rough at times, and a lot of it is because society doesn’t get it. As a parent, what has been most difficult is the lack of support, especially as a single parent. It’s been the two of us against the world. The attitudes out there are suffocating. And we know from experience that community support is essential. That’s why it’s important that we promote accessible, affordable healthcare. There are community programs that are critical to living a quality life with opportunities. The reason my daughter has had a good life is not because it’s been easy, but because despite all the obstacles, she has been able to do what she wants and become the person that she is meant to be. We both appreciate all the work that people have done to create a more inclusive society, and we talk about this a lot. Of course there is still a long way to go and a lot of it will come from changes in perception and attitudes. Using a social model, we may challenge barriers, rather than focus on the individual as somehow less human. Every one of us needs different types of community supports, whether or not we are aware of what they are. We just haven’t typically expanded support to accommodate disability. We change buildings now, like doorways and ramps. But not all disabilities are physical and some of the newest changes have been in technology and content development. Society has typically served a very narrow segment of the population and that is part of the reason that society is comfortable with only a subset of certain diversity spectrums. We can open our minds to consider much more variety of human experience. Then maybe we won’t feel so bad when someone else’s life is different from ours.