DO-IT News December 2023: All Articles

 

Recognize and understand what Neurodivergent means

A neurodivergent person is someone whose brain, body and nervous system operate differently from neurotypical people. Neurodivergent traits are frequently misunderstood and misinterpreted by neurotypical people and often viewed as aggressive or toxic interpersonal behaviors. Here are a few examples:

• People with autism can be seen as rude or angry or aggressive in their communication due to difficulties in picking up on non-verbal social cues or nuanced communication from neurotypical people.
• People with ADHD are often viewed by neurotypical people as lazy, flighty or irresponsible because they struggle with forgetfulness or go into periods of hyperfocus.
• People with dyspraxia can be seen as careless, clumsy, and destructive due to a number of possible impacts, including impaired fine motor skills, balance, and ability to judge proximity.
• People with auditory processing differences are not hearing impaired but may have difficulty distinguishing the meaning of spoken words without extra time to process or without supplemental input such as captions.

Neurotypical people can start the path to allyship by understanding that these, and other examples of differences in cognitive function, are not signs of low intelligence or intentional behaviors.

Recognize that Neurodivergent individuals choose to identify themselves in different ways

The person-first movement, an example of which might be “a person with Autism”, gained traction in recent years among disability rights movements but particularly in the neurodivergent community, that has never been uniformly adopted and identity-first language is still widely used. Among the neurodivergent communities, autistics in particular view Autism as a part of their identity. This is also true of many individuals who received diagnoses of “Asperger’s Syndrome”. The medical profession has dropped Asperger’s in favor of the Autism Spectrum, but many Aspies still see that as their diagnosis and part of their identity. Note that the Deaf community in particular also prefer identity-first language.

Functioning labels, such as “high-functioning” and “low-functioning” are discriminatory and harmful

Particularly in terms of Autism, individuals usually labeled “high-functioning” often need no, or less support and so are often overlooked. Those labeled “low-functioning” may be seen as incapable of things they can do independently. While these terms are usually applied to autistic people, the implication exists for other neurodivergent people; ADHD is a good example, as some people with ADHD function well without intervention or supports, while others may not. Like everyone, neurodivergent people have a variety of strengths and challenges; needs can vary by day, by environment, by activity. Rather than labeling neurodivergent people by “functioning”, focus on the type of support they need.

Communicate clearly, open communication without pressure and listen

• Many neurodivergent people have a hard time “reading between the lines”. For the neurotypical, communication is full of unspoken understandings. Using clear, plain language and take the time to check for understanding.
• It’s hard for neurodivergent people to initiate conversation, even if they have a topic they need or want to address with you. They just may not be ready. If an ND person is quiet, don’t assume they have nothing to say.
• Give time, opportunity and space, particularly in meetings; listen to the words of the ND person, not their tone or body language. Relaxed or social settings don’t necessarily make communicating easier for neurodivergent; it can sometimes make it harder.   

Give misunderstanding time to work itself out

Most often, a communication challenge can be clarified and worked through with discussion. Reframing a situation can be a particularly helpful process. But recognize that communication can require significant energy for neurodivergent people, and they may need a longer timeline – days, or even weeks for complex issues, to work through. This is a particularly important time to avoid negative assumptions; it’s also a time and process when they’re more likely to creep in.

Finally, take responsibility for your own learning

Check out additional resources:

• Autistic Self Advocacy Network
• ADDitude Magazine
• The Neurodiversity Hub
• The Neurodiversity Network

Are you familiar with the National Science Foundation’s (NSF) Facilitation Awards for Scientists and Engineers with Disabilities?  Buried in Chapter II of the NSF Proposal & Award Policies & Procedures Guide, is information about the supplements.  They were also highlighted in the 2021 Dear Colleague Letter: Persons with Disabilities – STEM Engagement and Access. A FASED supplement can be requested to alleviate barriers to participation in research or training for disabled personnel on a grant, including PIs, other senior personnel, graduate students, and undergraduates.

Funding must be spent on equipment or services that will ameliorate a barrier that is particular to the project rather than equipment or assistance that the disabled person would use in a more general way.  Examples given in the PAPPG include: prosthetic devices to manipulate a particular apparatus; equipment to convert sound to visual signals for a particular experiment; access to a special site or to a mode of transportation; or a reader or interpreter with special technical competence related to the project. A wheelchair, hearing aid, or more general purpose device would not be funded.

Requests for FASED supplements can either be included with a proposal when it is submitted or submitted as a supplement to an already existing award and should include information about the specific nature, purchase, and need for the equipment or services requested.

AccessComputing is interested in learning more about how members of our community have used FASED supplements.  Have you requested a FASED supplement?  Was it funded?  What was the funding used for?  If it was not funded, why wasn’t it?  Email us at accesscomp@uw.edu and tell us more.  We hope to use the information we learn to benefit our larger community.

Photos by Scott Hamilton and Lacey Johnson; photo originally used in RIT article.

Several AccessComputing Team Members completed their Ph.Ds this in 2023. Congratulations to each of them on this important milestone in their careers! Our first three new Ph.Ds set a major milestone: Abraham Glasser, Noella Kolash and Matthew Seita are the first three deaf Ph.Ds to graduate from RIT. 

• Abraham Glasser received his Ph.D in Computing and Information Studies. His dissertation, “Empirical Investigations and Dataset Collection for American Sign Language-Aware Personal Assistants.” Voice-controlled personal assistants are increasingly ubiquitous, and pose urgent accessibility challenges and barriers for DHH users. Dr. Glasser’s dissertation consisted of parallel research efforts investigating issues surrounding this technology, and provides a basis for future design and development of personal assistants that would be able to understand ASL input. Dr. Glasser started at Gallaudet University as an Assistant Professor this academic term.

• Noella Kolash received her Ph.D in Computing and Information Studies. Her research interests focus on accessible and educational technology and human computer interaction for Deaf and Hard of Hearing. Currently, she works on improving accessibility for people who are deaf through the selection of culturally understandable icons. Dr. Kolash works as a Junior Full Stack Engineer with the National Technical Institute for the Deaf at RIT.

• Matthew Seita received his Ph.D in Computer Science His research interests lie in accessibility and human-computer interaction and how Automatic Speech Recognition (ASR) can help deaf, hard of hearing and hearing people communicate better by designing ASR technology that will alert speakers that the software can’t pick them up clearly, which results in errors which lead to deaf people misunderstanding the communication exchange. Currently, Dr. Seita is doing a postdoc with Dr. Raja Kushalnagar at Gallaudet University. 

Several other AccessComputing team members either completed their Ph.Ds this year or will complete them before the new year:

• Aisha Urooj received her Ph.D in Computer Science from the University of Central Florida. Her dissertation, “Visual Question Answering: Exploring Trade-offs Between Task Accuracy and Explainability” explores the process of answering questions about complex situations in videos; the process requires capturing the underlying semantics of actors, objects, and their relationships and their evolution over time (actions). Dr. Urooj examined methods of embedding learning action and relationship in video to solve the video question-answering task. The learned embeddings have the information of implicit graph structure for actions and relationships which significantly benefits in answering complex reasoning-based questions about the video. Dr. Urooj is currently a postdoctoral research fellow in AI at the Mayo Clinic.

• Brittany Lewis received her Ph.D in Computer Science from the University of Rhode Island. Her dissertation, “Designing Accessible Computing Device Authentication For People With Upper Extremity Impairments” examines how computing device authentication makes assumptions about the user's ability to perform complex tasks with their arms, hands, and fingers. As a result, entering complex passwords, or accurately positioning a camera for facial recognition can create barriers for people with upper extremity impairment. Dr. Lewis said that the goal of her work “was to explore and design more accessible ways for people with UEI to log in to their computing devices.”

• Jennifer Adorno will graduate in December with a PhD in Computer Science and Engineering from the University of South Florida. Jennifer’s dissertation, “Refining The Machine Learning Pipeline For US-Based Public Transit Systems” focused on improving methods and tools for handling real-time data in public transit research with the goal of decreasing the barrier of entry for data-driven approaches. The research crossed several branches of computer science such as big data, data science, and human-computer interaction. Jennifer is currently searching for a postdoc position focused on accessibility research targeting blind or visually impaired individuals.

• Tee Chuanromanee received their Ph.D in Computer Science from the University of Notre Dame. Their thesis is titled "Designing the Trans Experience: Technology and Common Gender Transition Narratives." Dr. Chuanromanee’s dissertation studies the role of technology in gender transition, in particular, the roles of access, storytelling, and decision-making in gender transition. They currently work as a Human Factors Engineer at Southwest AIrlines in Dallas, TX, and continue part-time as a Research Assistant at the University of Michigan School of Information.

The Computing Research Association's Distributed Research Experience for Undergraduates (DREU) is a program that supports summer research experiences for undergraduate students from groups that are underrepresented in the computing field, which includes students with disabilities. AccessComputing has been partnering with this program for years to pair up team members with a variety of computing labs and faculty mentors.

During my time at DREU, I was involved in three projects: Building a mobile math application, a machine learning suicide prevention project, and ADHD research in the workplace. From the math-app project, I learned value skills in mobile development, and I feel comfortable developing my own mobile app. Additionally, the machine learning team just published a paper on the research we did, and I was listed as an author on that paper. This is a first for me so I am very excited to have something to show people.

The best part of my experience was the remote aspect. Since I was a remote worker, I was able to do my work while studying abroad in Oxford. I wrote code and completed research in England, Italy, and France. I would like to have a remote job out of college and travel Europe, so this was a taste of that lifestyle. I cannot thank DREU enough for the amazing experience, and I recommend this program to anyone interested!

As part of the Phase One curriculum, DO-IT Scholars watch the 2013 documentary Fixed, a documentary discussing the ethics and future of technology accommodating or “fixing” disabled people. Fixed contains many themes and ideas still relevant to today’s world, but it is a touch out-of-date. Much innovation has occurred over the past decade, and technologies that might have once seemed distant are now coming near.

Fixed contained a segment interviewing people on the street about the sorts of advanced capabilities they would want for themselves. In that vein, I asked fellow do-it scholars on technologies they’d like to see in the future or are interested in.

Delivery Drones

The practicalities and convenience of delivery drones is inarguable, however the roll out of delivery drone technologies can be tough- prone to issues or tied up in miles of red tape. Regulations mean it can take a while for companies to get approval for drone deliveries outside of line of sight on an operator, and some difficulties arise in urban environments. Only five companies have gotten an FAA (Federal Aviation Administration) rule 135 exemption (allowed to be out of sight and over people) as of this May, according to Forbes. These issues aren’t insurmountable – federal regulations can be met, and one solution to the urban problem, utilized by the Chinese company Meituan, is to drop off packages at kiosks instead of homes. In the past, much of the applications of delivery drones has to do with the medical side of deliveries, like carrying medicine and blood to hospitals. That is shifting. For a fun and local example, Pagliacci Pizza plans to roll out drone-based pizza delivery for smaller order sizes. Although drone delivery is yet to be commonplace, the technology is getting there, and a future with convenient drone delivery may be in sight.

Flying Cars

This technology is further out than the others, and less applicable to disabilities, but the potential is still interesting to explore. The research and development of flying cars has a surprisingly long history, kicking off with the Curtiss Airplane in 1917 (pictured below, left). It wasn’t much of a success, as might be clearly evident by the lack of flying cars on our roads. I’ll spare you a long explanation of the intervening aerospace history and skip ahead to the present with one major company. Alef Aeronautics, one of several modern companies looking to make the flying car dream reality, is developing their “Model A” (also pictured, right). It has a very recent FAA approval, and they hope to get it on our roads by 2025 (as of December last year) for $300,000. For reference, you can apparently purchase or build amateur recreational planes for far cheaper, although you shouldn’t expect first class. Over a century after the Curtiss Airplane, the sci-fi future dreamt by many has been…lamer than expected, but progress is still being made and perhaps even rather soon we may have flying cars on the road. Of course, they said that about self-driving cars, and look at where we are now.

Self-Driving Cars

For people who cannot drive, self-driving cars could be a lifesaver. For firefighters, they are just a nuisance. In locations with limited self-driving cars can get in the way of emergency response, although they are more of an annoyance than a real danger for the most part so far – with a few notable exceptions, such as the death of Elaine Hertzberg, a bicyclist, in 2020. That car had a safety driver as passenger, but she wasn’t paying attention and the car wasn’t capable of reacting fast enough to the pedestrian. Less seriously, self-driving cars can also clog up traffic as they struggle to manage more complicated situations. Despite these setbacks and poor public press, many taxi companies, such as Waymo and Cruise, are expanding. Very recently efforts in San Francisco to expand the Waymo driverless taxi service to be a 24/7 service has generated controversy.  Perhaps someday driverless cars will be ubiquitous, but there’s still many limitations to be worked out.

Mind Reading

Personally, I have no clue why people wish they could read minds. That feels like a pretty steep invasion of privacy to do so casually, and I’d really rather not know what people are thinking about.   Still, fair is fair, and this topic was a request. I’ll look at a few related ideas.

Mind to Text: Guess what? Chat-GPT is apparently good for more than just cheating on schoolwork… or whatever else people do with it. AI Technology has been recently used to create a less invasive method of “reading minds” – decoding data from MRI scans to construct full sentences to a reasonable degree of accuracy. The days of requiring implants or electrodes to record people’s internal thoughts are soon to be over, although the technology has some limitations. It’s certainly not the era of dystopian monitoring- the technology is not portable, requiring huge machines to work. It needs to be taught to adapt to a specific person’s brain to be accurate, a process that takes a long time. Still, through the power of AI, this technology has made recent bounds and may provide a useful way to provide speech to people who cannot talk in the future.

Mind to Computer: This technology was discussed in Fixed, I believe, all the way back in 2010. More recently, the start-up Synchron hope to achieve a less invasive interface that doesn’t require brain surgery- by connecting the interface through blood vessels rather than directly through the brain like companies such as Neuralink. This sort of procedure is considered much less risky than procedures that involve messing with the brain, so much so that they received FDA testing approval on humans before the highly publicized and well-funded Neuralink (owned by Elon Musk). Because the surgery isn’t brain or skull surgery, it can use less specialized doctors and be more accessible to a wider group of people. The neurotech is showing promise – pictured below is a tweet by a patient (“phil”) with ALS who used the implant to control a computer. Brain-Computer interfacing through vein implants seems strange, but it could make the technology safer and more available than in previous years.

Fixed did a stunning job of remaining relevant, but I doubt it could have predicted the kinds of advances made in the past 10 years. What kind of technologies would you like to see?

When I was a child, it was very difficult to sit still and be calm; I was always moving around and couldn't sit still. This could have been blamed on me being young but even as I got older I could not sit still. PI and others always wondered why until I got diagnosed with ADHD which affects my ability to focus especially in school. I have a disability that can’t be seen and it has completely affected my life in multiple ways.

When I found out about this as a child I didn’t think much about it but as I grew it really affected how I thought. Since I always moved around and struggled with paying attention in school people always made assumptions, it was always “stop moving so much” or “you’re weird” and everyone always wondered why and so did I. I always questioned why I was like this and said sorry all of the time and when I found out why I always disliked myself for it.

I never realized why and how it worked and as a child always blamed myself not knowing I couldn't help it. I was so scared of what people thought about me judging me until I was able to explain who I really am. I was too scared to speak up and advocate for myself so I just hid myself. My disability was not just invisible to others but invisible to me as well, that's because I ignored it and never accepted it as a part of me. I always thought I was “weird” or not “normal” but as I grew older I realized the truth.

I started taking medicine for my ADHD and it helped me calm down. But in school I had accommodations like being asked if I needed help out of nowhere and easier work. Even though I never liked it because other kids were not asked this I did need it at times I still hated it, why I hated it was because other kids did not need it and I wanted to be like them and be “normal”. But as time went on I realized I'm not just my disabilities, I'm smart and kind no matter what.

I realized what I did need and what I didn’t. So as I grew up I was able to confidently tell people why I'm like this and why I act like this, I became a stronger person saying what I wanted help with and what I didn’t. I was able to accept my disabilities and lived with them not letting them discourage me anymore, becoming stronger every day. So what I can say to everyone like me with invisible disabilities being judged without knowing why, don't be discouraged, keep pushing with no one stopping you from believing in yourself and your abilities.

“I wish I could run faster.” 

“I wish I looked normal.” 

“I wish I could move like her.” 

“I wish I could talk like them.” 

No matter how much I wish to live a life of normality, it is only wishful thinking. October 6 is National Cerebral Palsy Day, but for me… every day is Cerebral Palsy Day. I never knew life without cerebral palsy. 

Cerebral palsy was the reason I lived in a Chinese orphanage for the first seven years of my life, and it was the reason some strangers from America asked for videos of me. Why? They were worried they couldn’t provide for a little girl with CP. When they saw the video of a girl picking up tiny pieces of a puzzle and putting it together, they could tell I was focused and determined. That determination helps me get through life. 

Sitting in my new room, I intently watched as one of my parents showed me how to tie my shoes. I memorized every movement. 

“Let me try,” I said. Cris cross, pull it under, pull away, one bunny ear. 

Cris cross, pull it under, pull away, one bunny ear. “I’ll try making a bunny ear with my other hand.” 

Cris cross, pull it under, pull away, one bunny ear, wrap the other string around… pull it through. “Oh, come on!” 

Cris cross, pull it under, pull away, one bunny ear, wrap the other string around, and pull it through.

Cris cross, pull it under, pull away, one bunny ear, wrap the other string around, pull it through, but not all the way, and pull the bunny ears tighter. “I did it!” 

The sun shined bright and hot as I stood and waited for my events at the elementary track and field practice. I read the list of events and started to sweat. I couldn’t tell if the sweat was from the heat or nerves; it was probably both. The track meet was only a week away, and I was terrible at all the events, especially running. 

“What am I doing? I can’t run. I will definitely be in last place. I’m too short and slow. I also look weird when I run. Everyone is going to watch me.” 

On the day of the track meet, all I wished was not to finish last in the 50-meter dash. I headed over to the starting line, feeling nervous. “Welp, I think it's too late to back out now. I can do this.” My breathing quickened as I got ready. Doubts filled my head. I heard the gun and started running. Everyone was already ahead of me, and I was starting to feel tired, but I had to finish this race. When I reached the finish line, for a moment, I was disappointed … until I heard cheering. I looked back, and there was still a girl behind me. I squealed in excitement. 

On a daily basis, whenever someone glances at me, they can see how I walk or run. You can imagine I look a little different, but until they hear me talk, no one realizes that my disability also comes with a speech impediment. Walking and running is something I just do. I don’t have to think about putting one foot in front of the other. I just do it. It’s different with my speech impediment, though. 

“Roll your tongue to the back of your mouth!” Jenna instructs, pointing to a picture of a car, which is a word with an R in it for me to pronounce. If I say it wrong, I have to say the R sound over and over again until I get it right. It’s repetitive torture, but I know she is training my brain to make my tongue work right.

I have to concentrate on connecting my brain to my tongue so that every part of a word sounds crisp. It’s kind of like my tongue has a mind of its own sometimes. Ever since my first year in America, I’ve been going to speech therapy. Even though I get frustrated sometimes, I know this will benefit me. I won’t fully speak normally, but if I get better at pronunciation, then people won’t feel uncomfortable because they’ll understand me more easily. 

I have started to think about the future and how I can go through life independently. “Oh my gosh, what am I going to do if I can’t even provide for myself? No one is going to accept someone who's different.” 

My dad wanted me to meet a friend of his one weekend. We drove an hour or so to meet her. We were on Oregon State University’s campus waiting for her. 

“I wonder what she’s like.” 

As she came closer to us on her scooter, with her service dog, I started to see why my dad wanted me to meet her. She had CP, too. 

“This is Shelley,” Dad introduced her. 

My mom and my sister introduced themselves and me. The adults began a conversation, and I realized Shelly had a speech impediment, too. After a while with her, I wondered so many things. My dad asked questions about Shelley’s life for my benefit, knowing that there were so many questions running through my head. 

After talking with Shelley, I felt more confident about my own future. Shelley had a successful career and lots of friends who supported her. Looking at Shelley’s life, I know whatever the future holds for me, I will have people who will support me and give me chances to prove myself.

I know that I still have a lot of time ahead of me. Life won’t be easy, but I just have to keep moving forward. People might discount and overlook my abilities. Doubts and worries will come along, but if I stay determined and dedicated, I can do what I want to do and be who I want to be. My wishes can’t be granted, but I can make the best of what I was born with. I look forward to how the DO-IT Scholars will help me along the way.

 

My Disability and How DO-IT Has Helped Me

I have spastic diplegic cerebral palsy and use a walker most of the time and a wheelchair for longer distances. I joined DO-IT to find people who were also members of the Disabled community. I love DO-IT, one of my favorite sessions was Disability Identity which was led by Kayla Brown. We covered some of the history surrounding disability such as the passing of the ADA in July of 1990 and the 504 sit-ins. Along with that we also talked about the two models of disability, which are medical and social. Hearing about these two models helped me redefine my identity in relation to my disability. Along with the extremely informative sessions, DO-IT is a place of understanding. There is this solidarity, and you can be yourself without judgment. I love this program!

My Hobbies

I have been singing in choir for six years and have been doing voice lessons since February of 2021. I love the act of singing and music in general. It is a way for people to express themselves, tell stories, and connect with others. I also listen to music constantly when I am alone. I almost always have my noise-cancelling headphones on and play music on my phone - it makes me so happy and gives me so much energy. Another hobby I have is writing. I have been writing for as long as I can remember. I spent most of my lunch breaks in middle school writing. I love being able to escape into a different world – I do write realistic fiction. I have been working on a story of mine since July 2021 which is inspired by the fact that July is Disability Pride Month to celebrate the passing of the ADA. I love it. I love being able to tell stories and seeing myself represented – some of my characters are disabled. 

The best part about DO-IT for me or any other camp is getting to know the other scholars there and what better way to get to know a person than to ask them about their hobbies. For starters I am going to tell you a little bit about mine and then I will share with you some of the other students' hobbies.

I have many hobbies, but my favorite that I could go on talking about all day is writing. I love to make up characters and develop them into a story and or just create a playlist for them. My favorite character is Chandler, who is the character that I am drawing in the picture. He is my favorite because I like his hair and his style. He is also a very sarcastic character sometimes.

Now that you know a little bit about my hobbies, here are some other scholars’ hobbies and also some stuff. 

The first person was of Tami. Who says “My number one game is Minecraft.” She has been playing it since August of 2020.

Then the other person was a scholar named Eric. He loves to do chess, basketball, swimming, and anything to get his body exhausted. He said “I just like to work myself”

Then the last person that I interviewed and to know throughout the week in person during DO-IT was Julia. Her hobbies are swimming, writing, and singing. Why she likes those hobbies is because of self expression.

As you can see from what I have shared. The DO-IT Scholars from 2023 have a wide range of hobbies and interests. I have enjoyed hearing and learning about them throughout the time we got at DO-IT.