Disability and Attitude: How Both Affect One Man’s Worldview

I am pleased to have social worker and writer Jeff Flodin back as a guest blogger today. Jeff was diagnosed with Retinitis Pigmentosa at age 35 and is currently working on a short story collection about vision loss.

by Jeff Flodin

Jeff Flodin with his Seeing Eye dog.

Jeff Flodin with his Seeing Eye dog.

Over the years, I’ve walked almost 2,000 miles to and from work. Most trips are serene, a few stressful. My first step on every walk is to pause and take stock. I check the weather and traffic. I test that Randy’s harness is snug but not too tight. I pat my pockets for keys, iPhone, billfold and dog bags. Then I measure the most important factor I bring to my journey: My attitude.

My attitude determines whether I view the world as full of compassionate helpers or inconsiderate creeps. The constant in this equation is who’s out there; the variable is how I view them. On days I feel at ease with myself, I embrace the stranger. I walk with grace, like I just got out of church. But on days I’m immersed in self-pity, I assume all motives are sadistic. I take every real or imagined slight personally. I look for a fight and, by God, I find one. Attitude, action and reaction — the choice is mine whether I wear my blindness like a loose garment or a straightjacket.

On days I am at ease, I possess the humility to be right-sized in this world. I am a part of, rather than apart from, my fellows. On days of conflict, I carry the delusion of self-importance. I’m sure the driver who crowded me in the crosswalk waited all day and traveled a long way just to stick it to me. I’m certain the kid left his bicycle on the sidewalk so he could watch the blind man trip and fall. I just know the city worker dug up the sidewalk to confuse my guide dog. Oh, I get payback being the victim. Me, me, me becomes even more compelling when the me is wronged.

The riddle goes, “What have you got when you sober up a horse thief?” and the answer is, “A sober horse thief.” Self-pity, anger and grandiosity make me the horse thief, not blindness. For sure, blindness doesn’t help — it exacerbates the flaws I bring into play. I can’t change the blindness but I’m working on changing the flaws. My goal is progress, not perfection. So, I keep walking, keep practicing patience, tolerance and self-restraint. Today, I can greet my wife with, “I had a pretty good walk home from work today, Honey. I only yelled at one driver.” And that’s what I call progress!

A version of this post originally appeared on Jalapeños in the Oatmeal, Jeff Flodin’s blog about digesting vision loss.

Read more posts by Jeff:

How Can We Respect People with Disabilities? Start by Listening.

The fact of the matter is, “I am blind, and blindness takes extra”


How Has Being a Blind Mom Changed Over the Years?

Beth and her son, Gus, when he was a baby

Beth and her son, Gus, when he was a baby.

I subscribe to a podcast by The British Broadcasting Corporation (BBC) called Ouch. It features BBC journalists with disabilities who bring their personal experiences to the table, and it can be downright charming to hear them talk about disability in their lovely British and Irish accents. It’s intriguing, too, to hear how British and Irish laws regarding disability sometimes differ from ours here in the United States.

As you might imagine, I was all ears when reporter Emma Tracey checked in from maternity leave by phone to talk to Ouch about what it’s been like to be a blind mum. I am blind, too, but it’s been so long since our son Gus was an infant that I was curious to hear about any new techniques for 21st century parents taking care of infants they can’t see.

When Gus was little I took care of other infants during the day to make some pocket money on the side. Because infants don’t move much, they are easy to keep track of. When it came time to pick them up, I’d place my hands palms down on their mattress and feel around until I found a little body. I’d feel up and down to determine whether I had arms or legs, then lift the baby to my shoulder, one hand always under the head for support.

I walked backwards with babies to get us from room to room. That way if we bumped into door frames or walls, it’d be my well-padded bottom that took the impact rather than the baby’s head.

When giving a baby a bath, I always had soap and shampoo and towels within arm’s reach so I could keep one hand on the baby while searching with the other. When babies wanted to stretch out, I’d put them on a blanket on the floor and make a rule for myself to never ever step on that blanket whether a baby is on it or not. That way I could keep toys out all the time and not worry about tripping over them — or stepping on the baby!

Most parents supplied pre-made bottles that I simply put in the microwave when the baby got hungry. And yes, I always shook the bottle afterward and checked to make sure the formula wasn’t too hot. This is one aspect of baby care where BBC’s Emma Tracey had a different approach than mine: she is breastfeeding.

“The most challenging thing about feeding for me is based on my own hang-ups, and it’s feeding in public and doing it so that I don’t flash…” she said on the podcast, explaining she always brings a little cover along to use. “I think if I were sighted I’d be a lot more brazen about it.”

She said people look at her enough anyway, “so people look at me as a person with my dog, feeling around a table at a café for my tea or whatever I happen to be doin’, so actually, in fairness, breastfeeding shouldn’t bother me, but I think I am a little bit concerned about flashing!” Emma said she doesn’t let that concern stop her from breastfeeding in public, though. “I still do it and it’s fine, it’s absolutely fine.”

Other than that, Emma Tracey uses pretty much the same tricks I used back in the late 1980s when caring for Gus and other infants. We didn’t have smart phones back then, though, so one thing new is… texting.

Emma’s baby’s name is Tadhg, which is an Irish name that sounds like the first syllable in the word Tiger. “And the interesting thing about that is, I dictate all my messages and correspondence with Siri on my iPhone, and it is the least easy name to dictate in the world!” She says every time she gets to Tadhg’s name when she’s sending a text she has to stop what she’s saying, type t-a-d-h-g on to her smartphone, and then go back to dictating. “So he gets called ‘the baby’ a lot.”

And so, there you go. A different look, ahem, at mothering from a couple of blind mums. Happy Mother’s Day!


A Tribute to a Seeing Eye Dog

Last week was an emotional one for me. My new book Writing Out Loud was released on Tuesday, and my loveable retired Seeing Eye dog Hanni died the next day.

Beth Finke and Seeing Eye dog Hanni

Photo of Hanni and me from back cover of Writing Out Loud. Photo courtesy Kaitlin McCall

Hanni lived an amazing 17 years, guiding me and keeping me safe until she was ten, then bringing joy to our friends Steven and Nancy (they adopted her after she retired from guide work) for seven more years after that. Hanni played a major role in my life, and she plays a major role in my new book, too. It’s been a while since I wrote and revised some of the stories I’d written about her for Writing Out Loud, and rereading them this past week has helped me think about her and smile.

So how about we honor the memory of my brave, funny, smart, cute, fluffy, heroic, tail-wagging Seeing Eye dog by publishing chapter 24 from my new book here? That chapter is called Easterseals and the episode it describes dates back to 2005, when I was an intern here:

“Hello, Beth Finke?”

It’s a woman named Shirley. She works for a national non-profit called Easterseals that helps people with disabilities. “I heard one of your essays on the radio,” she says. “Would you be interested in an internship?”

I thought internships were for college kids. I am in my 40s. I don’t tell Shirley that, though. I just let her go on.

Easterseals is headquartered in Chicago, and they’ve just received a Technology Opportunities Project grant from the U.S. Department of Commerce. “We’re working with a software developer to find out if blind people can create and manage web content,” she says.

I have no idea what web content management is. I don’t tell her that either. I tell her I’ll come in for an interview.

No one at the interview seems surprised or bothered by my age and inexperience. Or if they are, they don’t mention it. We like each other and I accept their offer. The paid part-time internship will end by the time Hanni and Beth: Safe & Sound is in bookstores, leaving me time to promote the new book.

Easterseals supplies me with a talking computer and gives me classes to learn how to use assistive technology with online calendars and office software. There’s a permanent spot for Hanni’s bowl under the sink in the women’s bathroom. I have my own cubicle and learn the joys of conference calls and business meetings.

On Friday afternoons Shirley and I meet for a “weekly download” to go over my progress.

One Friday, we find out the office will close early, so we decide to do something special. We’ll have our meeting at Jake’s Pub, Shirley’s favorite bar in Chicago.

Before I leave the office, I search for Hanni’s bowl. It’s gone. Cleaning staff take it by mistake? Oh, well. Its 3 o’clock, and Hanni has to eat. So I spill her Ziploc bag of dog food right onto the floor in the bathroom stall. “C’mon, Hanni! C’mon, hurry up!” I want her to finish before someone comes in and catches her licking the bathroom floor. “Hurry up, Hanni!”

After finally, finally finishing her food, Hanni leads me downstairs where we pile into a cab with Shirley and head to Jake’s. What a thoroughly modern working woman I am, joining my boss for cocktails at happy hour!

One drink leads to another. I start getting hungry. Jake’s doesn’t sell food – not even beer nuts. But I’m prepared. I reach down into my bag, feel for my pouch of almonds, set them on the bar and start to munch.

Ugh! Yuck! I fumble frantically on the bar for a napkin and spit. Dog food! No wonder it had taken Hanni so long to eat her dinner in the bathroom stall – I’d given her my almonds!

I should be horrified, but I have to laugh. My boss laughs, too. She’s seen a lot at Jake’s, she says, but until now she’s never seen anyone belly up to the bar for dog food.


4 Questions a Dad of a Child with Autism Asks Daycare Centers

I am pleased to introduce Alex Robbins as a guest blogger today. As part of the Safety Today team, Mr. Robbins promotes home and community safety through his writing.

by Alex Robbins

A box of crayonsChoosing a daycare poses challenges for families on many levels. As the parent of a child on the autism spectrum, I had to use a bit of a different approach in seeking the best option for our family. It was not an easy process.

With any family there can be a guilt factor of leaving your child with strangers. You want to feel comfortable and at ease leaving your child at all. And it’s equally important that your child is comfortable and at ease, in addition to having the proper care and safety. This process becomes even more difficult when your child has special needs. If I had known then what I know now, it would have made a huge difference.

When touring a potential daycare center for your child, it’s best to think of yourself as a detective — one who needs to ask all the right questions to get a full understanding of the situation. In order to figure out if your child is going to be safe and successful, you need to do a little digging. Here are four essential questions you must ask any place you’re considering sending your child:

  1. What are your accreditation? All daycare centers must display the proper certifications — state licensing, first aid, CPR, etc. Accreditation is not a mandatory thing in most states, but you may want to make sure that the daycare center has been checked out and inspected by a reputable organization.
  2. How do you select your staff? It’s important that you know exactly how the staff is selected — how much experience is required to work there, if certain licenses are mandatory, etc. You should ask about criminal background checks as well. Not only that, but you should ask about the business’ staffing history. Is there a high turnover rate? That is, do people that work there stay there for very long? Inquire about the staff to child ratio. If there are only a couple staff members tasked with handling dozens of kids, it should throw up a huge red flag.
  3. Can I meet your staff? Don’t be afraid to ask to meet any and all staff that may come into contact with your child. If the daycare center is wary of arranging such meetings, be wary of their practices.
  4. Do you have an open-door policy? This one is pretty simple. Does the daycare center allow unannounced visits by parents, or do they make you call ahead to come in? If a daycare center doesn’t want you to drop by without warning, they might have something to hide. You should look for a center that has an open door policy.
  5. Can I see the daily curriculum? Presumably, you want your child to do more than eat snacks and nap while at daycare. You want your child to be mentally and physically engaged. This is why you must ask to see the center’s daily curriculum. You want to know how the daycare center is structuring your child’s day, from what activities are planned to how much time is devoted to learning vs. play. You may also want to ask to see past schedules, to make sure that the daycare center is active enough to change their schedule as the years pass. You don’t want to send your child to a stagnant program that hasn’t updated its curriculum in a decade.

Asking a lot of questions of a daycare staff is not rude or imposing — on the contrary, it’s necessary for any caring parent. If the center you’re touring has a problem answering your questions — by either being unwilling or unable — you might want to look elsewhere.

Are you looking for a daycare center for your child? Contact your local Easterseals to find out more!


A New Cookbook for People with Dysphagia Features Favorite Recipes

I am pleased to introduce Colleen O’Day as a guest blogger today. Colleen is a Senior Outreach Coordinator at 2U and works with schools to create resources that support K-12 students.

by Colleen O’Day

A recipe for rosemary mashed potatoes from the cookbook

A recipe for rosemary mashed potatoes from the cookbook. Click for a larger version.

NYU Steinhardt is changing the conversation on what eating can look (and taste) like for patients with dysphagia. According to The American Speech-Language-Hearing Association, 25% of adults in the United States are impacted by dysphagia.

Food is something everyone should be able to enjoy. Knowing this, Speech@NYU, New York University’s schools online master’s in speech-language pathology created Dining with Dysphagia: A Cookbook. The cookbook is a collection of recipes that are both easy to follow and easy to swallow.

Based on the NYU Steinhardt’s annual Dysphagia Iron Chef Competition, the goal of these recipes is to make eating an enjoyable experience for individuals with all levels of dysphagia. The annual competition is the capstone project of the intersession class between NYU graduate students from the nutrition program and the communicative sciences and disorders program to learn how to manage the needs of clients with different stages of dysphagia. The students create recipes as part of case studies for real patients.

One example from the 2017 competition was a young boy with autism who would only eat white, soft foods. The NYU students had to create a visually appealing, appetizing and nutritious meal that was completely white but also easy to swallow. Other cases from the competition included clients who had more medically-focused diagnoses.

“Food is nurturing, and too often it’s assumed that when someone is sick, we should just give them calories and nutrients. That’s not what food is, and we wanted to emphasize in this intersession class that regardless of a medical condition, we should always think about the importance of food – especially when someone’s sick,” says Lisa Sasson, clinical associate professor in the Department of Nutrition, Food Studies, and Public Health at NYU Steinhardt.

You can see (and taste!) for yourself by reading and trying out recipes from the cookbook here, and if you’re interested in learning more, check out NYU’s online masters in speech pathology program.


A Blind Woman’s Rant About Smartphone Use

Two hands holding an iPhone at a table.Smart phones, yes. Smart people, not always.

I heart technology. My talking computer has been a godsend since the first, crude sounding voice synthesizer was plugged into my IBM PC back in 1987. When the Internet was commercialized and we all started using email I could use it, too. Accessible technology allows me to surf the Web and all that. It’s been my unsighted window on the big world out there, and it’s enabled me to moderate this blog without being able to see.

My iPhone comes with an app called VoiceOver. I use it to text friends, book taxis, and sometimes, get this: I even make phone calls and talk to people with it. But when I sit down with you at dinner, or if I sit next to you at a bar, I don’t have my phone out.

And often, you do. And I think we’re having a conversation based on the fact that we started one, but it abruptly stops. And then I have to guess. In the past, it might be someone looking up at one of the TVs that have become ubiquitous in restaurants and bars: A big play in a game, some sort of cute Animal Planet show, a freakish accident in some other part of the world. I knew the televisions were there, so I came to expect that when someone ooed or cringed or laughed in a way that was inappropriate to what we’d been talking about, they probably had noticed something on the television screen.

I got good at figuring that all out, but I never liked conceding that whatever was on television was more important than the conversation we’d been having. And then the smartphone thing happened. So now, you can be anywhere talking with me, on a walk somewhere, driving in a car, sitting next to me at a ballgame, eating Thanksgiving dinner, at a concert, standing in line at the grocery store, eating a fancy dinner at an expensive restaurant, and I respond to what you are saying to me, and then you disappear. Are you okay? You still there?

Of course you are. You just got a text from someone more important than me. Or someone just posted a funny video on Facebook. Or rather than help me think through who it was who played the lead in “Heaven Can Wait” you took out your phone to look it up.

Okay, I’m second fiddle. I can deal with that. What makes me sad, though, is that without being able to see, I’m lost. You disappear, I can’t know what you’re doing, and I can’t know why. I don’t blame the technology. I just have a problem with that little bit of human behavior.

My husband Mike was slow to adopt a smart phone and swore he’d never get hooked, but I’ve caught him doing exactly the thing I just described, and it resulted in some minor skirmishes. Some major ones, too. These days, when Mike interrupts what we’re doing to look at his phone, he tells me before he takes it out of his pocket, and then he explains. If this happens at a time I don’t feel the situation warrants a Google search on the smartphone, I’ll ask him to put it away. Sometimes, he does. Progress!


For Guide Dogs and Humans, A Perfect Match Has Many Factors

Last Thursday my Seeing Eye dog Whitney and I took a train to Champaign to give a presentation to an animal sciences class at the University of Illinois. I speak to this class once a semester, and this time I spent a fair amount of the hour going over some of the qualifications necessary to become a guide dog instructor.

Most guide dog schools require instructors to have a college degree and then do an apprenticeship, and apprenticeships can last as long as four years. I hope I did a decent job explaining how complicated it can be to train dogs, train people, and then make a perfect match between the human and canine. That way the college kids might appreciate why the apprenticeships last so long.

Once apprentices finish their training and become full-time Seeing Eye instructors, they’re assigned a string (a group) of dogs and given four months to train that string. Throughout the training, instructors pay close attention to each dog’s pace and pull, and they make careful notes about how each dog deals with distractions, what their energy level is, and all sorts of other characteristics. And then? We blind students fly in from all over North America to be matched — and trained — with a new dog.

Photo of Whitney and Hanni.

Whitney and Hanni have an aloof tolerance for one another, but not much more. Whit wants to roughhouse. Hanni the doyenne is so over that. (Photo: Nancy Bolero.)

Seeing Eye instructors have to be as good at evaluating people as they are evaluating dogs. Our instructors review our applications before we arrive on the campus in Morristown and then ask us tons more questions when we get there. Instructors take us on “Juno” walks (they hold the front of the harness to guide us through all sorts of scenarios to get an idea of how fast we like to walk and how strong of a pull we’ll want from our dog). After that they combine all of this information with what they know about their string of dogs, talk it over with fellow instructors and the team supervisor, mix in a little bit of gut instinct, and voila! A match is formed.

Each Seeing Eye instructor trains more dogs than they’ll need for a class. If a dog has a pace, pull, or energy level that doesn’t match with a blind person in the current class, that dog remains on campus with daily walks and care, and perhaps more training, until the next class arrives. My first dog was one of those Seeing Eye dogs who went through a second round of training before she was matched with me. Back in 1991, the Seeing Eye knew that the dog they matched me with would be landing in the home of a very unique five-year-old boy named Gus, and that the dog would be in the hands of a woman who had never had a dog before. They must have figured Pandora would need all the extra training she could get!

Hanni was the perfect dog for everything going on during her years with me. We stayed overnight with this 17-year-old wonder and Nancy and Steven, the friends who adopted her when she retired, while we were there in Urbana. I can assure you, that girl is enjoying her retirement. Yellow Lab Harper saved me from getting hit by a car on State Street and retired early. The most dangerous encounter he’s had since was with a skunk in the leafy suburb he lives in with his people Larry and Chris now. My fourth dog Whitney had big paws to fill, and she’s managed beautifully.

My seven-year-old Golden/Labrador Retriever cross is a hard worker who loves to play as much as she loves to work. Her curiosity gets her in trouble sometimes, but when she guides me down busy Chicago streets, she is directed, determined, and driven. The only time she lollygags? When she realizes we’re heading back home. She wants to go, go, go! Whitney’s confidence is contagious, and she’s smart enough to know when to bend the rules without getting in trouble. So Whitney and I make a good match — we see eye to eye.

My upcoming book Writing Out Loud will include stories of all these dogs and more, and you can get a sneak peek of a short chapter online now by signing up for my newsletter.


What Would a Mandate on Audio Description Mean for Theaters?

A theatre seen from the perspective of a high up box seatQuick update on the disability lawsuit filed against Hamilton the Musical: A Forbes Magazine article this week reports that despite making significant progress, efforts to settle the lawsuit have hit a bump in the road.

Some background: A theatergoer who is blind has filed a class-action lawsuit against the producers and the New York City theater that’s offering the hit musical for failing to provide full and equal access to all theatergoers. I wrote a blog post about this last month questioning whether it is reasonable for a blind patron to insist the theater have a paid audio describer on hand at live productions of Hamilton for people who can’t see the stage, and now the Forbes article quotes the attorney representing the plaintiff saying, “The parties have agreed to the major terms of a settlement, including injunctive relief and monetary damages” and that audio description services will now be provided at the musical.” From the article:

“The plaintiff still wants the show to add information to its website describing the headsets, train its box office staff to ensure that all blind customers can obtain information about the headsets, and use ‘qualified readers’ for its live audio description service. But, the Hamilton team refuses to add the terms to the settlement, arguing that it has remediated all of the requests.

The plaintiff has asked the court to bring in a mediator. The judge is expected to make a ruling on the request soon.”

Mark Lasser, the plaintiff in this case, claimed that blind and visually impaired theatergoers can not appreciate the show without using the audio description service. His case argued that the absence of the amenity violates the Americans with Disabilities Act, which prohibits Broadway theaters and other public places of accommodation from discriminating against individuals with disabilities.

Last November, the U.S. Attorney General signed a rule requiring movie theaters to offer audio description services when showing digital films. Movie theaters must let the public know about the feature and have staff available to assist patrons with the equipment.

The Forbes article said that “Given the similarities of the movie venue and the live theater venue, the plaintiff argued that live theaters must also be required to provide live audio description to the blind.” But there’s the rub. Movie venues and live theater venues aren’t all that similar. Audio description for movies can be recorded once and attached to a movie showing anywhere, anytime. Live theater is, well, live. No show is the same, so in order to have live audio description you have to have a live human being sitting somewhere in the audience at that exact show to inform guests who are blind or visually impaired about what’s happening in scenes without dialogue as well as scenes with significant visual effects. The describer talks into a microphone that goes immediately into the headset that the person who is blind or visually impaired is wearing that night. If no one who needs the service shows up for that particular performance, the describer’s talents go unused.

With that in mind, rather than require audio description for every show, the plaintiff asked the Hamilton producers and the theater to provide live narration through 25 audio description headsets during just one performance each week. In an interview with NPR, an audio description specialist estimated the total cost of the system would be about $25,000 with monthly maintenance fees. At the time of the lawsuit, only four long-running Broadway shows had made that investment (The Lion King and Wicked among them).

The NPR story reported that under the terms of the ADA, the attorney representing the blind theatergoer couldn’t seek damages for his client and claimed attorney Scott Dinin was simply using Broadway’s biggest hit as an example to spotlight the problem. “We have to get a mindset — how do we increase inclusion?” the attorney told the NPR reporter. “It should be top of mind — equality, accommodation and respect — because once people put that at the decision-making table, all the services will flow from that.”

The NPR story also quoted a drama critic saying, “It only makes sense to spend the money on accommodations once it’s clear a show is successful enough to run for a while.” That quote brings up a question. What of smaller theaters? I go to performances here in Chicago put on by companies with annual budgets that don’t top $25,000. At some point will they end up having to provide audio description as well? What if they can’t afford it? Is that reasonable? I guess the jury is still out.



Breaking Out of the Toilet Talk Trap

One of the topics many of our readers express interest in is the relationship and dynamic between siblings where one or both have a disability. What does this bond look like? Is it any different? And while we aim to provide information about disability in today’s world, we find that sibling relationships are best illustrated through stories told by siblings and their parents.

That’s why we’re pleased to have Keith Hammond back with another post about raising two children who are both on the autism spectrum. His last entertaining post described his son Steven’s propensity to break iPads. After reading today’s guest post, I’m surprised Steven didn’t try to break his Dynavox, too!

Keith and his kids

Keith and his kids, Hillary (left) and Steven (right)

by Keith Hammond

As a parent of two children with special needs, I am often asked about how siblings with autism interact. Rather than try to explain, I think a story will illustrate it best.

My son, Steven, being non-verbal, relied on a Dynavox years ago. Steven’s Dynavox had two screens: an action screen and a noun screen. Steven could press a button on the action screen that said “I want to eat…” and on the noun screen, he could press his preferred item, say, “french fries.” The Dynavox would put the two together, and say in a robotic voice “I want to eat … french fries.” There was always a characteristically awkward pause in the middle putting the two screens together.

One day, we had taken the Dynavox to my wife’s cousin, Heather, who is a speech therapist in Columbus, Ohio. She tinkered around with it for about an hour or two, figured out how to program it, and added a few new things for us and his speech therapists at home. We figured that was that.

Well, Steven’s sister, Hillary, is really good with computers and an excellent visual learner. We had noticed she had been watching Heather program the Dynavox, but didn’t think anything of it. When we got home, however, our naivete was exposed.

Without our knowing, Hillary got her hands on Steven’s Dynavox and re-rigged it to where the noun was always the same, no matter what button was pressed. This was revealed when Steven began to say things like:

  • “I want to eat … poop.”
  • “I want to play with … poop.”
  • “I want a drink of … poop.”

Needless to say, Hillary was incredibly proud of her work and could not stop grinning. Neither my wife nor I could figure out how to reprogram a thing that an 8-year old figured out after a few hours’ observation. I could have watched the process for a couple of weeks and still never figured it out.

Thankfully, the school’s speech therapist was able to break us out of our trap of toilet talk. My wife and I scolded Hillary and told her not to do it again. Then, as any good parents will do, we shut the door and laughed ourselves silly.

As you can see, siblings with autism prank each other just as well as any other pair of siblings. Now, if you’ll excuse me, I need to…..poop.

Interested in reading more stories about siblings where one or both have a disability? Check out perspectives from other brothers and sisters here. We’d also love to hear stories about you and your siblings in the comments.


Losing Friends to Ableism

Text: Losing Friends to Ableism; Image: Multiple pins grouped together with one alone away from the group.“I would’ve made sure it was accessible if we were closer friends.”

An ex-friend said this after I expressed hurt over his party being held in an inaccessible venue. I wasn’t mad at him initially, since it was a surprise party, and it was planned by his family. They knew I couldn’t get inside, and they ignored guests who’d offered alternate, accessible spaces.

When this ex-friend told me of the event, all he said was, “sorry you can’t come.” That was it.

I wouldn’t have been too upset if this person offered to visit for a mini celebration with mutual friends. I wouldn’t have been angry if he gave a sincere apology rather than defensiveness and silence.

Ableism is the discrimination and oppression of people with disabilities in favor of people who are not disabled. It can take on many forms, from overt violence to inaccessible public spaces. Like racism or sexism, ableism is systematic and perpetuated regularly, and making accessibility a privilege offered only to closest friends or family is horrifically ableist. This person was someone I hung out with regularly, so I assumed we were good friends. But even if we were just acquaintances, what he said was dehumanizing.

To make things worse, he spouted that quote while knowing I was going through an emotionally vulnerable time in my life. I’m glad I ended that friendship, especially after realizing he was toxic in other ways as well.

This was not the first time folks have invited me to a party that was not accessible. One of my best friend’s mom hosted a party at a local VFW, and we all assumed it was wheelchair accessible because, you know, veterans.

But when I got there, there was a flight of stairs. Those friends were as upset and shocked as me, so we partied on another day at home — with ice cream cake. Compassion and following through to solve a problem make all the difference.

Dismissing my valid pain in the face of ableism is unacceptable. When that happens, the relationship needs to end. It can be hard (especially if you put a lot of energy into a friendship and genuinely enjoyed the company) but it’s necessary for survival. Healthy relationships begin with mutual respect. If you don’t respect each other, there is nothing to build on.

Losing friends to ableism exposes what people think of you as a human being, and that truth is painful. It’s another scar you get from living as a disabled person in a society that devalues you at every point. When I befriend abled people now, I do so cautiously and expect them to mess up occasionally. Unlearning ableism, for both abled and disabled people, is a process that never ends.

I still struggle with internalized ableism, and I am grateful to my disabled friends who help me through it. We learn from and hold each other responsible for breaking through those negative feelings. My abled friends who have put in the work to dismantle ableism through self-education and listening to/reading authentic disabled voices are people who I hold close. These are friendships I respect and cherish, and they’ll last a lifetime.

Read a longer version of this post on Erin Hawley’s Geeky Gimp blog.