Paul K. Longmore Institute on Disability - disability

"The Oracle Code" Shows How Disability and Heroism Aren’t Mutually Exclusive

Emily Beitiks — Mon, 24 Feb 2020 19:35:28 +0000

In a new graphic novel by Marieke Nijkamp, disability and superheroes coexist in a mysterious tale about Barbara Gordon and her rehabilitation in Arkham Center for Independence.

#1 New York Times bestselling author Marieke Nijkamp and artist Manuel Preitano unveil a graphic novel that explores the dark corridors of Barbara Gordon’s first mystery: herself.

After a gunshot leaves her paralyzed below the waist, Barbara Gordon undergoes physical and mental rehabilitation at the Arkham Center for Independence. She must adapt to a new normal, but she cannot shake the feeling that something is dangerously amiss. Strange sounds escape at night while patients start to go missing.

Is this suspicion simply a result of her trauma? Or does Barbara actually hear voices coming from the center’s labyrinthine hallways? It’s up to her to put the pieces together to solve the mysteries behind the walls.

In The Oracle Code, universal truths cannot be escaped, and Barbara Gordon must battle the phantoms of her past before they consume her future.

The Oracle Code comes out March 10th, 2020, anywhere books are sold.

We here at the Longmore Institute got the chance to ask Marieke Nijkamp some questions about The Oracle Code. See our Q&A below:

1) What’s an important aspect of this book that you’d like your readers to know?

The Oracle Code is my love letter to Barbara Gordon. To storytelling. To disabled readers. And with all of Manuel’s amazing art: a love letter to geekdom too. (Seriously there are so many amazing details that make the world come to life. I have a desperate need for all of the t-shirts in this book.)

2) Can you speak to the specific audience(s) that you had in mind when creating this work?

The Oracle Code is a book for readers who like superhero stories and puzzles and mysteries. It’s a book for readers who like stories about identity and finding yourself.

And in many ways, it’s a book for disabled readers. Disability is the norm in this book. Most of the characters on the page are disabled. It isn’t written for inspiration and neither is it written as a challenge to overcome. It simply meant to be the world we live in. (And if stories can feature all non-disabled casts, why shouldn’t it be the other way around too?)

But for those exact same reasons, it’s also a book for non-disabled readers. Because this is the world you live in, too.

3) Many superhero books feature a trope of main character becoming disabled and then gaining powers to “go beyond” disability - this character reworks that trope. Would you like to say more about that?

This was something I very consciously wanted to avoid while writing Babs’s story. Babs isn’t a hero in spite of her disability. She isn’t a hero because a disability gives her superpowers. She’s disabled and she is a hero. Those two aren’t mutually exclusive.

In fact, I think it’s far more powerful to explore both disability and heroism—or even simply: agency—at the same time, exactly because the two are so often juxtaposed. After all, claiming disabled people need special powers to be worthwhile is both unrealistic and harmful. None of us get powers to beyond our disabilities. Not everyone would even want to have those powers. Our worth lies in exactly who we are—and yes, we get to be heroes.

4) Can you speak to or elaborate at all about the intersection between your experience with disability and the main character’s?

Like Babs, I am disabled. Unlike Babs, my disabilities aren’t acquired but congenital. (hEDS, among others.) Unlike Babs, I don’t use a wheelchair, though I have done so on occasion. I use a cane. I use splints and braces.

Like Babs, I spent a year in a medical rehabilitation center in my teens, and a lot of that experience informed this story. Though I should point out, my experience wasn’t nearly as dramatic and mysterious as Babs’s! No creepy portraits on the walls, no disappearing patients, no sinister whispers in the middle of the night. But I struggled with making friends at first. With anger and grief. I also had to learn to find my way back.

5) At one point the main character, Barbara “Babs” Gordon, has a very open, and straightforward conversation with a friend, would you say more about your intention with that scene, which I read as a really bright moment of self-advocacy and boundary-defining?

An important part of this book is Babs’s journey to come to grips with who she is and who she can be. She had all these plans and expectations from life, and when she gets shot she feels like she lost them. She has to rebuild herself and that conversation is very much a key moment in the whole process. It’s the first time she explicitly states her boundaries and what she expects from the person in front of her. In doing so, it helps her realize what she needs from herself too.

6) Throughout the book, the phrase “fix it” appears, can you tell us more about your use of this phrase in relation to disability and ableism?

I’m physically disabled. I’m also autistic. As a result, I’ve had very many very well-meaning conversations with non-disabled people who are adamant that surely all I must want from life is a cure, is a way to “fix” me, to make me whole. (And the subtext of that often is: a way to make me a valuable, normal human being.)

A lot of that is ignorance. A desire to help, stemming from a flawed, ableist perception of what it means to be human, as defined by non-disabled people. To me power, self-acceptance, agency lie in simply stating this: we are who we are, we deserve to be able to equally participate in society, we deserve access to inclusive healthcare, we have the right to self-determination. We don’t need to be fixed.

The Oracle Code

Written by Marieke Nijkamp

Illustrated by Manuel Prietano

On sale everywhere books are sold on 3/10/2020

MSRP: $16.99

About Marieke Nijkamp:

Marieke Nijkamp is the #1 New York Times bestselling author of This is Where It Ends and Before I Let Go and the editor of the YA anthology Unbroken: 13 Stories Starring Disabled Teens. She is a storyteller, dreamer, globe-trotter, and geek. She resides in the Netherlands.

Tags:

comic books

disability

superheroes

SFFILM Partners with Superfest to Bring Disability into Schools

Ginger Testerman — Thu, 21 Nov 2019 19:56:18 +0000

For the last three years, Superfest Disability Film has teamed up with SFFILM's education program to bring disability filmmakers and films into K-12 San Francisco schools. Check out the write-up from our colleague at SFFILM about this year's program!

By: Maddy Leonard, SFFILM

On Friday October 11th, SFFILM Education, along with Cheryl Green, brought the short film Stinky Chicken Dog 2 into two San Francisco elementary schools as part of our Superfest partnership programming. (Here’s a link to the first Stinky Chicken Dog in case the name intrigues you.) Cheryl Green, a documentary filmmaker with acquired disabilities, whose work focuses on disability identity and culture and on making media accessible, directed the film along with Jenni Funk, who is also a disabled filmmaker from the Portland area. The film explores the complex and beautiful relationships between people with disabilities and their animals. Jenni uses a speech generating device throughout the film to interview a service dog owner and a companion pet owner. She also tells her own story of a tense relationship with her formerly abused and traumatized pet Chihuahua (the stinky chicken dog) who is frightened of her movements and her voice. The film is simple and light-hearted, which made it very accessible to young audiences. It allowed young viewers to empathize with others who might have different abilities than them.

The first visit was really special. It was at Town School for Boys with Christian Ceci-MacGillis’s 5th grade STEM class. His class was concurrently studying accessible technology, and for their final project they are going to build a bionic arm! Stinky Chicken Dog 2 evoked loads of questions and comments from the students about how the folks in the film became disabled, and how their pets helped them either physically or mentally. During their conversation with Cheryl, the boys were all very respectful, and some were able to open up about how disability had affected their own families too.

There was one special moment in the beginning of the visit that was especially touching. When Cheryl and I arrived, she told the class of boys that because of her disability, she was very sensitive to loud noises, and the sound of clapping was too much for her. She asked that instead during the presentation the boys rubbed their hands together to make a soft wisping noise. They immediately all practiced the noise together and had fun trying out this new version of “applause”. Then about five minutes into Cheryl’s Q & A, another class of boys came to join the presentation. As soon as the new class sat down, the original class told the newcomers about Cheryl’s sensitivity to loud noises, and they all collectively rubbed their hands together to “applaud” Cheryl. Cheryl explained to me, after the visit was over, that many adults refuse to acknowledge this accommodation request at presentations and events, and she was blown away by the receptiveness and kindness that the young boys expressed to her.

The second visit of the day was at Paul Revere Elementary with Christina Shak’s 3rd through 5th special day class. This class was a small group of about eight students with mild to moderate disabilities. Because many of the students in this class had short attention spans, we worked with Christina to plan a different activity other than our normal filmmaker Q & A. We first viewed the film with the students, then they had about five minutes to ask questions and interact with Cheryl. After that, Christina explained a drawing activity themed around Stinky Chicken Dog 2. The students drew either a pet they already have or an animal that is somehow special to them. Christina invited us to sit at the tables and participate in the activity along with the students. It was awesome to get one-on-one time with the students while they drew; and it gave Cheryl the opportunity to talk about her film more with interested students.

Overall, Cheryl’s presentations were not only meaningful to the students who got to interact with her, but they were informative to me as well. I learned a lot from Cheryl about the disability community and disability rights activism in film! These are some words she shared with me post visit:

“I've continued to reminisce about the experience with SFFILM and have shared stories about those class visits with my friends and colleagues here. Jenni, of course, is beyond thrilled. She showed the film to a graduate school speech therapy class where they study how to teach and work with people who use speech devices like hers. Getting to answer their questions and present to them was the highlight of her year. Now, with your idea to take it to the film programs' outreach into grade schools, well, she's walking on air at the thought! I'm really proud too!”

Make sure to follow the great work of SF Film on their Twitter (@sffilm), Instagram, (@sffilm) and/or Facebook!

Tags:

Superfest

disability

SFFILM

In My Mother's Eyes, and Mine

Visitor — Wed, 09 May 2018 21:42:20 +0000

The following blog is cross-posted from an Opinion piece by Catherine Kudlick, which was part of: The New York Times weekly Disability series

Credit: Elisa Talentino

I was blindfolded. My legs dangled off a chairlift high above the Colorado ski slope. I nervously licked at little bits of snow that tickled my lips. I was 43, and this was my first time downhill skiing. Whenever the contraption shuddered and bumped, I was convinced that we had become unhitched from the cable and were about to plunge to our deaths.

But assuming my experienced guide was right and we survived the ascent, what then? What should I do with the poles at the top? What if my skis got tangled up? What if the chair knocked me unconscious after I’d dismounted? And how would I explain this to my mother? I recalled the day not long before when I first broached the topic of my coming training at the Colorado Center for the Blind in Littleton. Hoping to appeal to her adventurous and quirky side, I explained that the program was a bit like Outward Bound. For those who had even slight partial vision, as I do, it involved wearing sleep shades as you did activities — including skiing — that most people assumed could be done only by the sighted. Mom agreed that this training would help my research on the history of blind people. As a social worker who had been active in the League of Women Voters studying inequalities in the juvenile justice system, she approved of my scholarship on marginalized groups.

But accepting that her daughter belonged to one of those groups was another matter.

After all these years, the idea that I might be blind enough to benefit from the program didn’t seem to register. I was born two months premature and totally blind with cataracts. Then several months later, I startled when my dad used his new camera flash to take a picture of me nestled in a butterfly chair. This wasn’t supposed to happen. Realizing that my eyes might actually be functioning, my parents whisked me off for the first of what would be a series of operations that would punctuate my life, initially giving me sight, then improving it, then saving it when it almost disappeared, and later improving it again. These procedures ultimately allowed me to see about 10 percent of what fully sighted people do. Thrilled that I wasn’t completely blind, I grew up as a profoundly visual person who believed in medical miracles. Each surgery brought some new discovery — the flicker of a candle, shiny wrapping paper, our silky black cat asleep on the golden chair. Everything I could see excited me and still does.

But while most people fear blindness because they perceive it as being lost in the dark, I associated it with being thrust into the spotlight.

It was easy to pretend that I had decent vision until the taunting began in elementary school. My cataracts left me wearing thick bifocal glasses and with a condition called nystagmus, rapid muscle movements that make my wandering eyes carry on a rich life of their own. The more I try to hold them still, the more they move. When I was a kid, a doctor explained that my eyes were “always looking for something better to see.” For me, it wasn’t always so poetic. One of the many operations I had as a young adult required the surgeon to carve out a larger hole in both pupils, with the painful consequence that my eyes are permanently dilated, and thus extremely sensitive to light. I have trouble walking outside at night or in crowded, chaotic places such as airports or hotels. When I’m tired or anxious, my visual world essentially disappears. I can use only one eye at a time, which means I lack depth perception, and I’m easily confused by shadows, brick walkways, curbs, steps and changes in floor texture. I can’t say for certain when shame obscured all the other complex feelings about my poor eyesight; I only know that unless it involved the miracle in the butterfly chair, we seldom talked about it at home. Nor did we talk about something even more taboo: my mother’s own eyes, and the idea that I inherited my vision problems from her. Mom functioned through most of her life with one poorly working eye that nobody wanted to admit was rapidly getting worse. As a child, I somehow never connected the fact that I had the only mom in all of suburbia who didn’t drive with my friends’ questions about why her eyes were different colors. Because Mom didn’t wear glasses and Dad did, I grew up believing that he was the one with eye problems. To be fair, we had many enablers to help construct a comfortable, dishonest world. Because blindness induces so much fear in everyone, friends, teachers, store clerks and even ophthalmologists colluded to turn my mother and me into people who appeared to have far better vision. At a young age, I’d memorized the seldom-changing eye chart so I could perform better on eye exams. I hadn’t set out to deceive anyone; I simply wanted to make people happy because they acted so pleased when I improved. So when I’d told her about the Colorado Center for the Blind program all these years later, she said: “But, Cath, you never needed a blind school before. You’ve even been teaching college!” Then, with concern in her voice, she asked,

“Has something changed, baby?”

I struggled to find words. Yes, things had been changing. But it wasn’t about what my eyes weren’t seeing; it was about how I was coming to see myself. After decades of pretending to be someone with decent eyesight, I was at last ready to confront this blindness that always hovered at the edges of my world. Skiing with a blindfold was just the beginning.

I’d like to say we were finally able to speak about this freely, but families being families, we never did. I wish we were able to have chided each other for allowing stigma to pull the wool over our eyes (pun intended!) for so many years. We might have bonded over how much work it takes to spend day after day pretending to see the world just like everyone else. We might have even credited our poor eyesight for giving us a fresh perspective on things that fully sighted people take for granted. Imagine swapping stories about how we coped, about absurd situations, about how we made alternative sense of the world! But, honestly, I didn’t need my mother to do this. Growing up before disability rights and with a mother who berated her for being flawed, my mom had perfected her own strategies and blazed her own trail. Surely, she faced self-doubt and pushed past both her own fears and those of others. She cultivated nonconformity and invented tools to deal with having to give up a career in New York City in order to be a good wife hauling kids and groceries on a bicycle in suburbia. In the face of such love and courage, who am I to insist she add embracing blindness to the mix? When at last my ski guide told me the chairlift had reached the top, I was surprisingly calm. I even imagined taking Mom skiing to thank her for the inner strength and audacity that led me to the top of that mountain in the first place.

Then again, she was right there, just as she has been all along.

Catherine Kudlick (right) stands with her mother (left)

Tags:

Disability Commentary

Opinion

The New York TImes

An Ode to the Service Dog: A Talk with Sonja Ohldag

Visitor — Thu, 02 Nov 2017 22:33:07 +0000

Leading up to Superfest 2017, Superfest intern Celina Gomez spoke with Sonja Ohldag about her film Chief. To follow the film on Facebook, visit: https://www.facebook.com/sohldag/posts/355631324847145

Celina Garcia: Chief is comprised of both still imagery and home-video style footage. At what point did you decide you wanted to fashion them into a documentary, and how did this dictate the type of footage you then captured?

Sonja Ohldag: I’ve captured most his training moments on camera. Taping and photographing for me is training diary, progress reports, it gives me feedback on things I could do better in order to improve chief’s progress and mine. The videos help me to determine how well we’re doing in our training schedule. People often times don’t know that legit Owner/Trainers follow individualized task schedules and have a system, which is geared toward their teaching pace and skills, and the dogs’ learning and progressing pace and skill levels. Service dog training for different kinds of disabilities require different types of training. As an Owner/Trainer, we have to discipline ourselves every single day to stay on track. That’s not always easy, but the picture material helps me to stay on track and provide consistency for Chief and myself. I like to have a journal, for mainly me, but also for others to see and experience what goes into service dog training.

Lots of Owner/Trainers have benefitted from the videos and wonderful conversations have come out of it. Those videos and photo material have helped me to resolve access challenges, too. Chief’s movie only shows fragments of it and I wish we could have put every single photo and video into it, but that would be almost 6 years of material. In short - the photos and videos, are for proof of training, self-evaluation and interaction with other Owner/Trainers and of course, for memories. I’ve always wanted to write a book about Jolanda, the dog I worked with before Chief. She was the book kind of dog. But Chief loves the camera and he loves to pose and I knew from day one that he needed to be on screen. People love seeing his photos and videos, which made the final decision easy.

CG: Prior to making Chief, what types of films or stories had you seen where you felt they properly reflected life with a service dog? What sort of influences did you draw inspiration from, or did you feel there was a gap in representation?

SO: Yes, there’s clearly a gap in representation and often times misrepresentation or underrepresentation. Often times people think it’s more than enough to always want to hang out with their dog to turn their pets into service animals, but that’s not how it works. Owner/Trainers are hardly ever mentioned in a positive light, which I find heartbreaking, but somewhat understandable since we have no representative who would promote us in public or share our stories, nor do we have the funds to do it ourselves. Lots of us have social media pages in which we try to help people access our world. Many people with disabilities literally put their lives on hold and spend lots and lots of hours and money on training their own dogs. We meet up for training and exchange tips, we help each other, we travel far for meetups and have to make all the phone calls ourselves. No one finds us “interesting” enough to follow us around… We have to organize those things and it’s really exhausting, but rewarding. We’re all dealing with daily struggles and the amount of effort and team work it takes can’t be put in words.

I want for people to hear the good things about us. I want for people to see and understand that we’re out there, our dogs are incredible, and they’re highly trained and carefully chosen, and how it isn’t easy to train your own dog while you’re the one who needs the dog’s help. I also want them to see this process, and how owning a service dog is a lifelong responsibility and takes continuous training. My inspiration is my life and the dogs I’ve worked with and people who surround me. It’s such a beautiful feeling when someone truly “sees” your dog and immediately says - wow, what a cool dog you have. I can tell it’s a well-trained service dog. Those are the people I’m grateful for every single day. It’s such a good situation when people ask sincere questions about Chief or training. We’re always happy to explain and educate and people even get to say hi to him when they are respectful and interested. Luckily Chief is perceived very well and people naturally feel drawn to him.

CG: What kinds of obstacles did you encounter as a first-time filmmaker?

SO: Oy...nothing major. Amir Jaffer generously donated his time and knowledge to make this film happen. It’s was a really amazing process. He was not familiar with owner training initially, so we spent lots of time talking about service animals and training. Many conversations were personal and of course, some subjects were emotional and challenging. But we took our time and worked our way through it. I think the process was an incredible experience. We had a few logistical challenges in regards to finding days to film and do the interviews since we both travel frequently. Some days we met up with other Owner/Trainers and we had to find dates to get us all together. Sometimes I just simply had a hard time finding the right words or was dealing with personal issues. When you live with a disability, the illness doesn’t necessarily define everything you do, but it does influence your days. But other than that, it was a really awesome experience, and I can’t thank Amir enough for being so reliable and for helping me turn my thoughts into an actual film. I can be challenging to work with at times, but he was steady and kept us on track.

CG: In a short amount of time, your film captures a variety of issues. Why do you think film is an important medium in spreading awareness on not only service dogs but also highlighting living with an invisible disability?

SO: Watching or hearing something is oftentimes easier for people to access. It’s less “time consuming” and people are more willing to watch a short movie rather than hear someone talk or read pamphlets or books, plus I find it more personal. I love all media such as books and film and audio. I’ve shown Chief’s movie many times during educational events and people respond with different emotions. Some people were speechless, others cried, many were happy and sincerely appreciated it. They feel connected to Chief and myself, which immediately offers a great baseline for any kind of conversation and discussions. Invisible disabilities are things people don’t like to talk about. There’s still a lot of stigma attached and people often times are judged. I’m at a point where I’m completely open about my disability and feel comfortable sharing when people ask. Chief is such an amazing little guy, he makes me look special. But it’s all him. Chiefie’s movie helps people connect and understand on a cognitive and emotional level. It touches them. I’m glad it does.

CG: Do you feel there’s been an increased skepticism towards guide/service dogs? What do you hope resonates with audiences after viewing your film?

SO: I could go on and on about politics and schools vs Owner/Trainers, and about people thinking they know it all, and all those “specialists” out there who think they’re totally rad.... I don’t think people are “more” skeptical toward service animals, but due to lots of propaganda and the media reporting all the bad things, people now think they know “all about it,” and they are now confronted with things more than they used to be. Not too many years ago any kind of service animal was rather a rarity. Today, more people do have legit service animals and they’ve become more public.

Unfortunately, most people don’t know how to tell a legit working dog from a pet in a harness or vest. There’s lots of stuff going through the media, but hardly any sincere service animal education. Often times people can’t tell a well-trained dog from a training school or from an Owner/Trainer from a poorly trained one. There are poorly trained legit service animals as much as there are amazingly well-trained ones. They don’t know how to look for behavior, connection between handler and dog, synchronicity, etc… What makes me really unhappy is how businesses often times make no effort to keep people with disabilities and their dogs safe. They are poorly informed about existing laws.

CG: What questions can a covered entity's employees ask to determine if a dog is a service animal?

SO: In situations where it is not obvious that the dog is a service animal, staff may ask only two specific questions: (1) is the dog a service animal required because of a disability? And (2) what work or task has the dog been trained to perform? Staff are not allowed to request any documentation for the dog, require that the dog demonstrate its task, or inquire about the nature of the person's disability. Someone with a legit dog, who has had proper training should, for their own protection, make no fuss and respond accordingly. Businesses need to take responsibility so others can see that the “service dog business” is a serious one and that lives depend on it. Skepticism often times comes from being uninformed or feeling helpless and results in accidental or purposeful discrimination. I like to give people a hand and help them understand. It’s not easy, and it is very exhausting, but it’s worth all the encounters we had.

CG: Finally, what do you look forward to being a part of Superfest?

SO: I’m just so so honored that Chief’s movie was selected for this specific festival - it means the world to me. Can’t wait for the festival to start. My best friend from Germany is flying in to be there for us. It’s just amazing. Looking forward to all the things :)

*This interview has been edited and condensed for clarity.

Tags:

Superfest: International Disability Film Festival

Longmore Institute Receives Important Gift to Support SF State Students at the Intersection of LGBTQ and Disability Worlds

Visitor — Fri, 22 Sep 2017 22:22:50 +0000

A seventeen-year friendship between two campus administrators has blossomed into a significant gift to the Paul K. Longmore Institute on Disability at San Francisco State University. Al Alston, Norma Siani-Alston, and Eugene Chelberg

Norma Siani-Alston, recently retired from her position as Director of Special Events for the Office of the President, announced the $10,000 gift on September 16 to honor her dear friend Eugene R. Chelberg, Associate Vice President for Student Affairs. The terms of her charitable gift annuity stipulate that "The Eugene R. Chelberg Fellowship will provide undergraduate and graduate students with an opportunity to gain valuable internship experience with the Longmore Institute on Disability. Preference in the award of the fellowship will be given to students active in both the LGBTQ and disability communities."

"This is an exciting breakthrough gift for many reasons," says Longmore Institute Director Catherine Kudlick. "It's the first in the country — and indeed the world — to openly tap students at this intersection; scholarships and opportunities tend to highlight one or the other of these identities, when in fact a significant number of people inhabit both." Kudlick points out that some of the most exciting scholarship in disability studies explores the intersections between queerness and disability.

Siani first met Gene in 2001 when he, as she put it, “was always haranguing me about ADA (Americans with Disabilities Act) issues regarding the commencement ceremony and … was a pain in the butt!” One day Gene invited Norma to lunch to pick her brain regarding his upcoming wedding plans. “When Gene asked me for recommendations for where to hold their ceremony, for some reason, I said ‘let me be your wedding planner.’ He said ‘yes,’ and from then on we became the closest of friends.”

Siani also had a friendly teasing relationship with Paul Longmore who used a wheelchair. “We met when I worked for then-SF State President Corrigan. We always said hello to one another with Paul waving his foot at me and my waving mine right back at him.”

“When Paul passed, I was devastated, I lost a dear friend. I decided in his memory to donate to the Paul Longmore Institute. And now with this gift to Gene, I get to give to two dear friends at once!”

Siani’s husband Al Alston passed away in 2013 but his memory lives on through her generosity.

“And now thanks to her gift,” director Kudlick stated, “we’re well on our way to making sure a future Gene Pool keeps pushing for LGBTQ and disability rights.”

Ending the Cycle of Low Expectations

Visitor — Thu, 14 Sep 2017 21:34:51 +0000

By: Danny Thomas Vang

"A school counselor administered the Braille test to me at a different time and place than everyone else so that I could have more time. However, it was not even graded until after the winners had already been announced, and my parents asked how I had done. I can only assume that everyone thought I would not have been competitive. But after it was finally graded, I actually came in second."

How teachers and schools interact with students serves as a major indicator of future success; a negative outlook will stifle potential but a positive outlook can promote innovation and bring out the best in a student. Nicole Torcolini, a blind woman who is a computer programmer in the accessibility department at Google, spoke about how engagement with work readiness programs that outreach to people with disabilities can bridge the gap between a lackluster supportive environment for the disability community and tech relevant careers. She is a proud Stanford graduate who loves to figure out how objects and items operate.

As shown by the opening quotation from Torcolini, low societal expectations of people with disabilities can limit students with disabilities trying to carve out a path in STEM (science, technology, engineering, and mathematics). Like Torcolini, many of the other interviewees we spoke with remembered being discouraged from STEM fields – labs tended to be inaccessible and chemistry and math made for more challenging translations to braille.

However, Torcolini was able to break this cycle of low expectations and pursue her dreams because of her supportive family as well as several programs aimed to support people with disabilities pursuing careers in tech: Youth Employment Solutions (YES); Disabilities, Opportunities, Internetworking, and Technology (DO-IT); and camp sessions held by the National Federation of the Blind (NFB).

Torcolini expressed how the employment readiness programs gave her the chance to practice mock interviews, learn more about tech, engage in volunteer jobs, network with people in the field, and create relationships with mentors. She argues that when hosting programs to encourage people to pursue a career in tech, employers should “reserve spots for people with disabilities or reach out to the community to find people to participate in existing programs” to ensure that diverse talent is brought to the workforce. These programs will allow students with disabilities to decide for themselves whether tech is the correct path for them.

The benefits of these programs aren’t just for people with disabilities. Torcolini points out that “There is a misconception that if you have a disability, you cannot work and are going to cost the company a lot of money. But people with disabilities contribute a lot of good ideas and perspectives to companies. Even if they need equipment, people with disabilities still work and can be productive and an asset to the company.”

Torcolini demonstrates the need for people with disabilities in tech in her current role at Google, where she knows she’s making a difference. She explains, “Most people who work on accessibility have never used a screen reader before. If they have, they have played with it. But not actually used it. By hiring me, they got someone who uses a screen reader and knows accessibility problems.”

To learn more about the contributions and perspectives of people with disabilities working in tech, watch our webinar (with audio description and captioning): https://longmoreinstitute.wordpress.com/2017/08/23/beyond-diversity-101-learning-from-the-perspectives-of-people-with-disabilities-in-tech-w-webinar-video/

Read more from our series on disability as #diversityintech:

Tags:

People with Disabilities in Tech

STEM

technology

Youth Employment Services

There’s Always Something to be Done: Liz Henry on Being Disabled in Tech

Visitor — Mon, 11 Sep 2017 23:43:39 +0000

By: Asa Gordon Liz Henry, Release Manager at Mozilla

Liz is currently the release manager for Mozilla, and has worked in two eras of tech: the 1990s and the mid-2000s to the present. She learned her computer skills from tinkering with computers from a young age, and having the freedom to experiment. In addition to her work in open source software, Liz is a blogger, writer and translator, and is involved in hackerspace projects. Liz deals with mobility impairments, and chronic pain from those impairments, that have a significant effect on how she can work.

The structure of Liz’s work at Mozilla has many benefits for her because of her mobility impairments. Instead of working on a traditional hourly schedule, she has longer timeframes, like six weeks to work on a project. This means that even if she is not productive over a specific hour or even a day, she is very productive over the course of those six weeks. In addition to this, Liz often works remotely with a distributed team who are in many different time zones around the world. It is not important that everyone be working at the same time. It’s more important that communication is strong, persistent, and frequent. If she has a flare-up and is unable to leave the house she still has the possibility of getting work done. She often thinks, as she is working from bed, that this job is perfect for people with mobility issues.

In addition, the fact that her physical condition can change at a moment’s notice means that she is very good at contingency planning. And since software release, as she describes it, can be “a constant disaster,” this skill is very helpful in her workplace. In her opinion, anyone with a disability who has managed their own healthcare competently, with all the medical, insurance, and government bureaucracies, has many skills needed in software project management - tracking a complex process and coordinating work across several teams.

Liz’s relationship with her work in tech has changed over the course of her time working in it. In the ‘90s she was much more uncertain about how people would treat her and her disability. She would often fake being able-bodied for a job interview, scoping out the location days beforehand to see how she could get through it with minimal signs of having a disability, minimizing walking distance. Then when on the job, she would openly use her mobility aids such as cane, crutches, or wheelchair. She worried that if possible employers saw her disability first, they would think she was too unreliable or would be out on sick leave too often. Liz describes this period as, “struggling to be as badass as possible; to be super tough and independent and hide any difficulties. And then I would have that moment where I would go oh no, I am going out on medical leave.” Interestingly, she often got more rude (and illegal) assumptions and questions about her gender, like whether she would get pregnant, than about her disability in this period.

In contrast, Liz has found that now things are more open around disability, although there are still some issues. In general, Liz finds that the places she works at now are more welcoming and upfront about their healthcare policies. She also is more upfront about her needs, partially because she has openly blogged about it, so people are more likely to have come across the information. She also relies on her wheelchair or scooter for mobility, which you can’t exactly hide. She finds that her team often acknowledges the need for skills like contingency planning as well nowadays. Despite this general atmosphere of acceptance, Liz often finds herself the only visibly disabled person or wheelchair user at work. Even at the yearly Mozilla conference, which brings together around 1000 people from the company, she has been the only wheelchair user for many years.

Liz has also found that companies and event organizers could improve their work around accessibility. Like many disabled people, being an unpaid disability consultant (and general diversity since she is also a woman) is, “my extra job, right?” She feels particularly strongly about event accessibility. Many times, a conference will claim they are accessible when they don’t have the structure to make the supposedly accessible spaces as easily usable as the non-accessible parts for able-bodied people. Some examples include having to hunt down the manager with the keys to the freight elevator and the time when Liz had to crawl on stage to give a talk. On this she says, “OK, I have to crawl on stage in front of two thousand people…I can do it, and I did do it, but it was not the frame of mind I wanted to be in, i.e. fury…when I’m on stage giving a talk.” Liz is much more convinced by an event’s or company’s effort when they have detailed accessibility information that is easy to find by default.

Many times, while waiting for a freight elevator or hotel lift to be unlocked, the people Liz are waiting with are mothers with double-wide strollers or an elderly person with a cane. She is also frequently approached by people asking for advice on mobility aids, or even where the nursing room is, because her mobility aids mean she is in a marked state. Because of this, Liz feels it is important to seek solidarity with unexpected groups who can also benefit from disability accommodations. Although it can feel devaluing, as if disabled people aren’t truly the important ones, it is ultimately helpful in getting everyone the services they need. She is honored when people ask her questions like the ones above, because it tells her that those people recognize that solidarity.

Unfortunately, Liz’s marked state doesn’t always produce positive reactions. Since her physical condition changes, she doesn’t fit the common stereotype of the paralyzed wheelchair user. Thus, she will get rude comments like, “what’s your deal, I saw your legs move!” One particularly egregious example of this is when a woman in HR gave her and a chronically ill coworker a “heartfelt speech” about how she would kill herself if she had a disability, since she wouldn’t want to be a burden on her family. When Liz asked if she should kill herself, since she had similar problems, the woman replied that Liz shouldn’t because she has great upper arm strength. Liz says, “And I was like, oh is that the barrier? If I don’t have upper arm strength I should just off myself?” However, Liz has also had significant positive experiences because of her marked state. When Noisebridge, a hackerspace Liz is involved in, was moving spaces she brought up that they should keep wheelchair accessibility in mind. They did, and to this day maintain that accessibility in multiple ways. She says that despite her visibly being around, they probably would not have considered accessibility if she had not mentioned it. Other wheelchair users have benefitted from the constant attention to accessibility at Bay Area hackerspaces like Noisebridge, Sudo Room, and Double Union.

Liz has always been attracted to hackerspaces and open source software for the ideals of the movement. In theory, it is open to anyone, although in practice the same oppressive dynamics as elsewhere can apply. She believes that people and companies who force customers into exclusive, expensive deals are “super evil” whether they are a tech company or a wheelchair manufacturer. Liz thinks Wikipedia, the Internet Archive, Mozilla, and similar organizations are “awesome”, and says that although they can be anarchic and chaotic, the rules for helping exist, “you just have to figure out which part of it you care about.” She also says that in that chaos, “there’s always something to be done.” Volunteering for open source projects can be a good way for people with disabilities to test the waters of the industry, and is a great pathway to get hired.

Students for Access cares about making the tech industry accessible and available to people with disabilities by default, so that others don’t have to be the only disabled person they can find in their workplace. We thank Liz for opening up about her experience and perspective in the tech industry, so that others may learn from it. Read more from our Disability in Tech series here:

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The Glass Elevator: Chris Schlechty’s Path through Tech

Visitor — Mon, 28 Aug 2017 22:07:36 +0000

Chris Schlechty, a Senior Software Engineer at Microsoft, makes his story of breaking into tech as a person with a disability sound rather easy. He visited the Microsoft campus as a student at a nearby high school, and there he learned about the “DO-IT program” (Disability Opportunities Internetworking Technology), run by the University of Washington, which helps people with disabilities secure careers in STEM. By his senior year of high school, he was already a participant with DO-IT and an intern at Microsoft. When he graduated college, he had an offer to come back to Microsoft full time and has remained with the company ever since.

His disability may, in fact, have given him a head start on his career success. He shared, “I’ve had a lot more personal experience with time management and planning than other people have. Being a wheelchair user, I have a lot of experience planning logistics, thinking how I’m going to get from point A to B, so it’s effectively a self-managing perspective. Doing extra planning, figuring out the schedules - it kinda blends into project development and being a manager of people. You already have a subset of those skills.”

At Microsoft, where he serves as his team’s accessibility expert, he has felt accepted and welcomed from day one. His accommodations as a wheelchair rider, namely a well-organized office and an accessible desk, have always been met, and he remarks that his accommodations are treated no differently than other nondisabled team members’ needs, like working from home or being able to leave at a set time to pick up their kids.

It’s outside his place of employment where he sometimes encounters negative perceptions of disability. “People always assume that since I’m in a wheelchair and young, people think I’m not working, living at home, and then they find out that ‘You work at Microsoft? Really?,’ that initial shock that you’re defying what they expected.”

While Chris’s path into tech was straightforward, the path forward for his career is murkier due to “the glass elevator,” (think “glass ceiling,” but a barrier that is more disability-specific). “You can only get so high up before you risk losing your benefits,” Chris explains, “There are a lot of strategies but it’s really hard to navigate, it’s a huge pain… I crossed the threshold and now rely on family for personal care which I know is not a long-term solution and I’m not entirely sure how I’ll navigate that moving forward.”

While the glass elevator is a problem in all employment positions, it’s particularly likely in the tech sector today. Chris added, “The healthcare is great, but you have to be able to live and do stuff other than just going to the doctor. It’s difficult because a lot of the tech jobs are in really expensive areas, so it’s the high cost of housing, and you’d be paying for at least two added personal care assistants. There’s so many extra expenses when you have to rely on other people.”

Chris’s story raises an important point that’s often forgotten when we discuss the need for more diversity in tech. Getting people like Chris, who has clearly been an asset to the company, to work in tech isn’t just about adding a disability page to a company’s website or asking recruiters to strive for more disability hires. It involves opening up the paths for disabled people in hiring, retention, and development, and sometimes, that might involve supporting social changes that go beyond the workplace.

Interested in more on disability in tech? You can watch our webinar “Beyond Diversity 101: Learning from the Perspectives of People with Disabilities in Tech” now (with captioning and audio description).

Read more from our Disability in Tech series here:

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The Future is Now: Virtual Reality Artist & Researcher M Eifler

Visitor — Fri, 25 Aug 2017 17:08:45 +0000

By: Ellie Gordon M. Eifler

When M Eilfer describes their position on the eleVR team as an artist/ researcher “who works on virtual and augmented reality systems,” you might feel as though you have slipped into the pages of a really good sci-fi novel. It would make sense then, that their office/ studio in a lofty industrial building in downtown San Francisco would look like a futuristic art laboratory. Once you leave your shoes at the door and walk past the large geometric shaped sculptures to sit on green and purple mats, you notice that the brick walls are strung with series of bright abstract paintings. Instead of a desk, M’s computer sits on a low to ground table surrounded by red cushions and yoga blocks.

M is one of four people on the eleVR team, a non-profit research project of the Human Advancement Research Community, that studies and experiments with virtual reality and immersive virtual media in order to understand and develop new ways of thinking with computation. EleVR’s many projects, shown on their website, can look like everything from mathematical experiments to Seuss-like art projects that combine both real and virtual materials. In 2014, the team created the first spherical video player for web virtual reality. Instead of having hard deadlines or end-goals, the team works from an open ended research model in which technological inventions affects how their psychical testing is done and how the material practice is done in turn aids the development of new technology. This, M believes, “is the future of technology research."

The cyclical process of research and art making is something M learned when they were sick and out of work for many years due to a traumatic brain injury caused by carbon monoxide/ chlorine gas poisoning they were exposed to at a swimming pool when they were ten. When M was home-bound they “became an artist because [they] needed a way to function and learn how to be an adult with a body that couldn’t do what [they] thought it would be able to do.” From their years at home, they found that art was a therapeutic and transformative tool that taught them how to be a hard worker and creative problem solver - all skills they use in in their work at eleVR. M's customized workspace.

M says their full-time work and productivity is not only supported by their personally curated environment but also because of a culture of trust built with their intimate and highly collaborative team. Chronic migraines, extreme heat sensitivity and spontaneous loss of motor skills leave M. incapacitated for moments throughout the week. But in the company common space, “there are couches out there, and if I suddenly get a migraine, or suddenly my hands aren’t working, going out and laying on those couches isn’t socially inappropriate at my work environment. If I fall asleep at 2:00 in the afternoon, no one would think ‘oh you’re a lazy human.’” M has not always worked in such an accessible environment and recalled a time at a previous job where the elevator was constantly broken and if they got sick, had to spend 45 minutes going down the stairs on their butt.

M believes that disability inclusion in the workplace is built upon three different elements: physical infrastructure, social infrastructure and personal infrastructure. On a personal level, M says they are fortunate enough to have a supportive partner and service dog who helps them function while working full time. M doesn’t think that every job is able to support every disabled person in all the ways they need, but that they hope that recruiters and managers can start to take a more holistic vision of accommodation that consider factors that go beyond physical access to ensure general life quality. And building a supportive infrastructure at work, M says, goes both ways:

“Not only does the person with the disability trust the environment that they’re working in, so they can disclose and actually ask for what they need…but the working environment also has to trust the person with the disability…if you trust people to do a thing that you need them to do and they trust that they can ask for the things that they need, you will build a work environment that’s better for everyone.”

M admits that asking for needs at work can be very difficult and personal. As a queer, non-binary person, the way M presents themselves is a work of art. They make almost all their own clothes out of funky fabric and often rock cubist-style panting’s on one side of their shaved head. While everyone at work knew of their disabilities and that they were queer, disclosing to their team that they were non-binary, a gender identity on the transgender spectrum, was deeply emotional: “My disability needs a lot of help so I felt like this weird shame… [At first] asking people to change my pronouns [and use them/they] I felt like I’m already asking people to make a mental effort to help me when I’m disabled. It definitely felt like, am I taking up too many mental resources?” M’s coworkers embraced them coming out as non-binary but too often are disabled people forced to compromise aspects of their identity due to ableist cultural standards that pigeon-hole them or threat their needs as burdens.

While universal design may seem like a futuristic fix to access issues in the workplace, M isn’t having it. A universal model would not be realistic to cater to each person’s individual and unique disabilities. Workspaces, they believe need to be custom in their accommodations and flexible to change. The concept of diversity, like universal design, is a buzz word that M is also critical about. Don’t forget, M says, that tech is mostly run, and its work environments deigned by “a network of white boys.” Thinking ahead to the future of the industry, M says; “Disability is not just a hiring pipeline thing… you actually have to every day, on an ongoing basis, support someone that has needs that the rest of people, of many able bodied people in your company are not going to need.”