Category: Uncategorized

This week, I’m sharing another post by Reina Grosvalet. Reina tells us about her experience being diagnosed with a chronic illness and adjusting her professional plans as a result. Fortunately, Reina was able to find the support and opportunity to stay engaged in the work that brings her enjoyment and meaning. Here is her post:

Sometimes, it may seem that when you are living with a debilitating illness your dreams can never come true, and this is especially the case if your illness interferes with your ability to have your dream job in your preferred field. The good news is there is hope, as there are numerous ways you can engage in a fulfilling career with debilitating illness. Allow me to tell my story.

My Shattered Dreams

As long as I can remember, I always wanted to be a doctor. I read stories about blind physicians, and I even met some at the National Federation of the Blind national convention one summer. I enrolled in college to prepare for medical school, and I even achieved high scores on the practice MCAT. I purchased numerous medical eBooks to get a head start on reading medical school materials. I was bound and determined to hit the ground running. Then, my life changed forever.

I always had some health challenges throughout my life due to Mitochondrial Disease. I was born blind, and I grew up contending with G.I. challenges, double incontinence, chronic pain and worsening health; however, I never felt these things were impossible to handle. I always adapted and overcame my challenges. I was even working in IT full-time as an accessibility subject matter expert while in school, and I traveled for business periodically. Then, when I was 32 years of age, Mitochondrial Disease threw me a curve ball I was not prepared to catch. After a terrible flu virus that sent my body into a prolonged metabolic crisis, I lost my ability to walk. With that came the loss of my job, as they did not allow me to work remotely or take a caregiver to work.

I went through several months of physical therapy. While I was able to get to a point where I could walk with support, such as by holding onto someone or using a walker, I never progressed further. The more I participated in physical therapy, my quality of life suffered because my body could not handle the effort, and I was eventually discharged due to lack of progress. Plus, my FMLA was up, and I lost my work insurance.

I hit rock bottom. I fell into a depression because I felt like my life had lost purpose, but I kept praying. I asked God to help me find another job and to also help me find another way to realize my dreams. God eventually came through for me.

Realizing My Dreams Differently

God delivered on his promise to me in less than two weeks. I received a call about a completely remote accessibility subject matter expert position. Feeling like it was too good to be true, I explained how I was ill and could not commit to working in the office. I explained my reliance on caregiver support and my fatigue. Surprisingly, there was no pushback. I passed both interviews and was hired in short order.

I am still gainfully employed full-time today. I work under remarkable leadership, and I have all the accommodation I need. I also work a second job that is just as awesome. Even so, I have not forgotten about becoming a doctor.

I have come to accept I am not healthy enough to attend medical school, and I especially cannot handle residency; however, I have gone a different route to fulfill my dreams. I have only one year left to obtain my bachelor’s in psychology, and I plan to go to pursue my master’s and then a PHD. I can do all of this from home through an online college that is set up for busy professionals. I am also prepared to become certified as a cat behaviorist through the Animal Behavioral College because I love helping cats with behavioral challenges. I have significant experience working with cats since I run a cat sanctuary in my home to provide a forever home for cats the shelters will not even give a chance.

I have found a way to fulfill my dreams differently. I will still work in medicine, but just not in the way I dreamed I would. I will be working with people and animals, and I will still be a doctor, but just not in the way I originally saw myself.

A debilitating illness does not have to rob you of your dreams. Even if you cannot work in the job you originally wanted, there are other things you may be able to do in your field of choice. You may have to think outside of the box to find something you can do, but it is well worth the effort.

“The biggest problem for a blind diner has very little to do with any mechanical or logistical difficulty of blindness, and instead centers on the condescending, exclusionary, or simply ignorant attitudes and behaviors of sighted people.”

“But when everything works, however that might happen — an up-to-date braille or large-print menu, available without fuss; an accessible website; a well-trained waitstaff — the public perception and experience of blindness shifts from estrangement to normalcy and belonging.”

Back when I was a doctoral student, I attended a “Blind Café” event with my then-boyfriend (now-husband) Jason. We were collaborating on some disability simulation research, and we considered using the Blind Café as a field site for data collection, so we wanted to check it out first.

I remember spending a long time waiting in a lobby and being told the rules of engagement for the event: no cell phones, and if we needed to leave the dining room to use the bathroom, or for any other reason, we were instructed to flag down a server for assistance first. Then, we walked through three layers of curtains into a dark room, in a conga line. We were seated at tables, with a bowl of lukewarm soup in front of each of us. Bread was also available. After a while, servers brought us an unidentified vegetarian meal.

I listened to my fellow diners struggling to pass bread and to find their plates and drinking cups in the dark, laughing at their predicament. To distract myself from their sad commentaries on what people thought it was like to live my life as a blind person, I tried to focus on my food. My tongue distrusted the taste of the unidentified ingredients, and my teeth were wary of the odd textures. I forced myself to nibble, thinking of how much more I enjoy my food when I know what’s in it.

After dinner there was a music show, but Jason and I decided it was time to go home. We needed to be up early for school the next day. Being told we had to get assistance to leave the table made me want to rebel. Jason and I stood up, and I used my cane to cover both of us as we walked back toward the curtains. Eventually Jason picked up on a tiny bit of stray light, and between that little bit of light and my white cane, we independently got out of there.

When I read this article by Andrew Leland, I immediately thought of the stark differences between my Blind Café experience and my many joyous experiences eating out in restaurants. I have dined out hundreds of times in my life: with family, with sighted friends, with blind friends, with a mix of blind and sighted people, with coworkers, strangers, first dates, and everything in between. When I eat out, choosing my meal is at least half the fun—an opportunity Blind Café did not allow. When I dine out, I can freely leave the table, or walk around. I don’t struggle with the mechanics of finding my dishes. Restaurant meals can fulfill a desire for daring culinary adventure, or for the comforting predictability of a chain-restaurant meal to soothe and distract me from the worries of life. Besides the physical and sensory satisfaction of the food, I have many happy memories of social occasions and fellowship shared at restaurant tables.

Andrew Leland also describes some of the real barriers we can encounter as blind diners. Fortunately, the barriers of microaggressions, inaccessible menus, and discrimination are all barriers we, as a society, can collectively overcome. When waiters go out of their way to make my blind friends and I feel welcome—like at times when they’ve read us menus with dramatic flare—it confirms in my mind that my friends and I belong.

What It’s Like to Eat at Restaurants When You’re Blind

Content warning: discussion of seclusion, restraint, ableist and racist violence.

.

.

.

In October 2016, while writing a chapter for a book on ableism, I came across a research article about the use of “aversive interventions” (i.e., punishments) for the “behavior management” of children with disabilities in schools. I shared it on social media, writing: “This is absolutely horrific. As recently as 2009, disabled kids in our country are being subjected to behavior management methods that are not only inhumane, but research has shown them to be ineffective and counterproductive. The most common perpetrators were special education teachers who are supposed to know better.”

Over the next almost-seven years, I would learn far more about these practices, including seclusion (the involuntary confinement of a student to an enclosed area) and restraint (physically immobilizing a student’s body). Not surprisingly, these practices are far more common for students with disabilities, nonspeaking students, Black students, brown students, and Black and brown students with disabilities than for White and nondisabled students. Such practices not only cause trauma for survivors, but they also put school staff at risk for injury. I also learned about other abuses of people with developmental disabilities, such as the skin shocks used at a “school” in Massachusetts, the 2013 murder of a man with Down syndrome by police, and the killing of disabled people by their caregivers.

Last week, I was honored to give an online presentation for the Alliance Against Seclusion and Restraint, a nonprofit organization dedicated to reducing and eliminating the use of punitive discipline and outdated behavioral management approaches, and ending the school-to-prison pipeline. My presentation follows the general outline of Chapter 15 in Just Human, mapping the dynamic co-escalation process that can lead people in power to resort to extreme methods of exerting control over people with less power. After examining the process and the factors that make it more likely to play out with disabled, Black and brown students, I present three points in the process when de-escalating, non-punitive intervention is possible.

Here are links to the presentation video, audio with transcript, and slide deck. You can listen to the audio podcast via your favorite podcast app (just search for “AASR Live”) if you prefer. (Note I start speaking around 8 minutes in. The total run time for the audio/video is about 90 minutes).

Watch the video with captions here

Listen to the podcast or read the transcript here

Download the slide deck here

At a blindness workshop I attended almost 20 years ago, a presenter said something that has always stayed with me. The presenter, who is blind, stated that “a lightbulb is an accommodation for sighted people.”

This may sound ridiculous, but indeed, artificial lighting meets the definition of an accommodation. According to Dictionary.com, one meaning of an accommodation is “anything that fulfills a want, need, etc.” Another is “adjustment, as of differences or to new circumstances.”

Artificial lighting is an environmental modification that meets the needs of seeing people. In popular culture, we don’t think of lighting as an accommodation simply because it is needed and used by the vast majority of the population.

In the disability world, “reasonable accommodations” are usually discussed in the context of institutions, like education, employment, or standardized testing. Typically, people in power within those institutions (teachers, principals, supervisors, human resources, business leaders, testing boards) control what accommodations disabled people can get. Individuals with disabilities have the burden of requesting specific accommodations, often proving why they are needed, and then they are subject to the control of those in power to determine what accommodations to provide. All too often, the accommodations process is onerous and accommodations are denied.

Sometimes, accommodations are denied because they are not feasible to provide, cost-prohibitive, etc. But more often, harmful attitudes about disability accommodations reinforce the burden on disabled people to secure them, the delays in approval, and the prevalence of denials. Some people mistakenly think a job done with accommodations is somehow inferior to a job done without them. Conversely, others believe accommodations are “special treatment” and that people who get accommodations have an unfair advantage over those who do not get them.

There are lots of societal notions about disability-related accommodations. What happens if we take disability out of the equation entirely, though, and consider how people accommodate each other routinely in our relationships?

Here are a few examples of accommodations in my daily life that have nothing to do with disability:

• My husband doesn’t like green peppers. I don’t like olives. Our friend likes both, but she doesn’t eat meat. When we order pizza, we get a vegetarian pizza with olives on one side and green peppers on the other. Then all three of us can enjoy the toppings we like and skip the ones we dislike.
• I had a dental checkup yesterday. My mouth is unusually small for an adult’s mouth, so getting good X-rays is challenging. The dentist remembered my small mouth and ordered a different type of X-ray that doesn’t involve inserting bitewings into the back of my mouth. I also had a traumatic experience years ago with a water pick, so the dentist accommodates me by hand-cleaning my teeth instead. This time she forgot, but she always gets my consent before she does anything, so when she asked if it was OK to use the water pick, I reminded her to use the hand scaler and she happily accommodated me.
• My friend likes to talk on the phone. I prefer texting. We agreed to a weekly phone call. She texts first to ask when it’s a good time. I can end the phone call when I get tired. If she needs to talk about something specific in between the weekly calls, she asks and I honor her need if I can.
• When my husband and I were first dating, we watched a movie with two of my blind friends at my small apartment. Of the four of us, he was the only one who needed to see the screen. It took some work and we had to move a few chairs around, but we were able to provide him the accommodation of preferential seating so he could see the movie. (OK, this last one does relate to disabilities, but in reverse).

People in close relationships accommodate each other constantly without thinking about it. Babies and toddlers are some of the world’s most fierce self-advocates. If a baby needs an accommodation from their caregiver, whether it’s removing a dirty diaper, repositioning, rocking or feeding, baby will cry and cry until that accommodation is provided. Caregivers learn quickly to respond and accommodate. Over time, they learn what baby likes and doesn’t like, and there’s less guessing involved in determining accommodations. Similarly, family members, spouses, friends, and housemates all accommodate each other’s preferences, needs, and wants whenever sharing time and space. Meeting each other’s needs and wants in relationships isn’t special treatment or unfair advantage, as long as everyone’s needs are included.

I do want to address one argument that’s been made for not over-accommodating children and teenagers with disabilities. Some say we shouldn’t provide all accommodations because youth need to learn how to function when those accommodations are unavailable. While I heartily disagree with this view, I will first point out a couple of caveats. If a young person is doing an educational activity meant to build a specific skill, accommodations should be crafted so they don’t bypass all use of that skill, or else the educational goals should be amended so that skill is not involved. For example, letting someone dictate their answers would be an inappropriate accommodation for a spelling test, and if they are unable to write, spelling should perhaps not be one of their goals. Secondly, if we have always used an accommodation throughout life, we may never discover whether or not the accommodation is needed. Sometimes, people (of all ages) might voluntarily choose to try doing something without their usual accommodation, or with a different one, to learn what their true needs are. My husband originally believed he disliked all onions and peppers. Recently, entirely on his own direction, he has experimented and discovered he does like red and yellow peppers and can tolerate onion in some cases. Our friend cooks with a lot of onions, so she checks in with him each time to ask whether he wants the onions omitted from each recipe, and puts onions in only if he says it’s OK for that particular recipe.

Consent is paramount. Removing a child’s accommodations without their consent “so they can learn to function in the real world” is harmful and it is also pointless. Imagine if the power company turned off the power grid for ten minutes each day to help sighted people learn to function in the dark, because someday there might be a power outage? No power company (run by sighted people) would ever do that. Instead, sighted people plan ahead by buying portable flashlights or candles and using those to get by when there’s a power outage. In other words, they identify alternate accommodations that they can personally control in case something happens out of their control (an outage).

I think disabled children and teens should absolutely be helped to identify backup strategies and alternate accommodations to utilize, including self-accommodations, if their preferred accommodations are denied. They should also become aware of the accommodations that help them most and the language for requesting and advocating for their needs. That will benefit them far more as adults than arbitrarily withholding accommodations in a power move.

Consent is absolutely crucial, in both directions. Forcing someone to accept an accommodation is just as harmful as withholding a needed one. If someone has not explicitly asked for an accommodation but they appear to be having difficulty without one, it can be tricky to know what to do. You truly can never go wrong with a conversation. You can ask if there is a need, or offer a specific accommodation and ask if it is wanted, and then, it is important to respect the answer given. Every time we ask “is this OK?” in our close relationships, we are doing this.

If we think of accommodation as a universal part of all human relationships, accommodating disabled people needn’t carry the stigma that it so often does. It can truly be as routine as turning on the lights.