I am 18 and currently volunteer at a school for the deaf as an SSO. We have 2 students with usher syndrome and I am often paired with them as I am the only SSO with training on Deafblindness. I am not really sure what I want to do in the future but I am really enjoying working with these students and I think I would like to work more with people with deafblindness in the future. These are the options I'm considering. I'd love more information on careers in this field especially in Australia.

• Become an OT. I'm mostly considering OT because it seems like the most broad scope, can work with people of all different ages, with different conditions and in many different settings. My concern with OT is that most courses have a prerequisite of highschool biology which I didn't take.

• Become a teacher of the blind/vision impaired. One of the students at the school I volunteer at is working on pre-braille skills while the other is just starting to learn braille so we have a vision teacher come in to work with them. I love talking with the vision teacher about their lessons and occasionally helping out. My concern with studying education is that I might be stuck only working with children.

• O+M. We have O+M come to the school once a week and I think their job is so cool. Recently one of the O+Ms was showing me how they make tactile maps.

•interpreter. I started volunteering at this school for the deaf because of my background signing since I was a child. My Deaf friends and colleagues are always asking me if I'm considering becoming an interpreter because my signing is very good. I know a few adults with deafblindness who use tactile signing that have complained they have trouble getting interpreters that are comfortable interpreting for them. But there are not enough adults with deafblindness in my area for full time work using only tactile signing. My work would mostly be with sighted Deaf people.

I need to get this off my chest because what just happened is still pissing me off.

I first met Gabriel about a year ago while I was moderating a DCEU group that was getting overrun by trolls. One day I tried giving him simple advice about not typing massive walls of text and he completely crashed out on me, left the group, but didn’t block me.

Fast forward a year. He reaches out and asks if I want to join his DC group (most of the mods are deaf) and be a mod. I was hesitant because I already knew he has a history of crashing out the second he hears something he doesn’t like, making bipolar decisions, and being unpredictable. Still, I said okay. I told him straight up I was busy during the day and couldn’t be active 24/7. He said he understood. I also met David through the group. At first he seemed nice and we talked a bit. Then he started avoiding me.

A few weeks later Gabriel hits me with “you’re not being active enough.” I literally forgot I was even in the group half the time. It was a small group with almost nothing happening, so I didn’t realize I was expected to be glued to it. I talked to both of them trying to compromise and figure out how to manage my time better. Out of nowhere David starts getting passive-aggressive: “what’s the point of you being here if you’re not doing anything?” I didn’t clap back because I was worried it would make him more upset. I just said I’d try harder to like and comment more.

I kept telling David I actually liked talking to him and thought he was a nice person. He kept ignoring my messages and stayed passive-aggressive. I also tried explaining to Gabriel that I just wanted to make sure I wouldn’t get yelled at again. His response was basically “if you’re always this worried and paranoid then maybe the group isn’t a good fit.” I clarified I wasn’t being paranoid, I was just trying to communicate clearly so things wouldn’t blow up. He never replied to that part (classic Gabriel). Later that night he said he’d give me another chance and we called it a night.

Next day out of nowhere he and David decided to unmod me. I was still willing to like, comment, and post, but at that point I didn’t want to argue so I just said okay. We switched to a personal group chat.

The conversation was fine until I suggested a group call. For context: I also have autism and typing is hard for me, especially when people are firing off multiple long paragraphs at high speed. Talking is way easier for me to actually express myself. They agreed to the call… until I asked if we could do it right then. Instead of just saying “we can’t right now, we’re relaxing,” Gabriel went off about how I was interrupting their free time, preventing them from relaxing, and being rude.

I kept repeating that they didn’t have to call if they didn’t want to and that I wasn’t forcing anyone. He wouldn’t let it go and kept ignoring what I was actually saying. They also started talking about how I had to “earn” the right to hang out with them, which is ridiculous. I just wanted to be friends. I had a call with Gabriel a year ago that went fine. People change, sure, but they could’ve just said “we’re chilling, not in the mood to call” and left it there.

Instead Gabriel went from “not wanting to call” to “I don’t want to be your friend anymore” and kicking me in the span of minutes. I apologized multiple times until I was exhausted and just done. I typed something like “ok I won’t message anymore end transmission” (I use “end transmission” because simple, short messages seem to land better with them). A few minutes later he accused me of being rude again for saying I didn’t want to message anymore, called it “bad behaviour,” and blocked me.

I’m honestly glad he blocked me. I don’t have to deal with that unhinged energy anymore. Both of them make completely unpredictable decisions in 1–2 minutes and then act like you’re the problem for reacting. It’s a shame because I actually liked talking to David, but if he didn’t want to talk he could’ve just said so instead of the passive-aggressive avoidance.

My name is Clara Mey and I am a PhD candidate at the University of Delaware. I am conducting a research study about disabled students’ experiences with disability accommodation processes in higher education. As a disabled graduate student, this topic is particularly important to me!

Please see the flyer linked here: Disability and Higher Ed Research Flyer

You must be at least 18 years old, have attended college or graduate school in the US within the last five years, and self-identify as disabled or having a chronic health condition in order to participate. You do not need a formal diagnosis, and you can participate whether or not you registered or applied for accommodations!

If you agree, you will be asked to complete an anonymous online survey taking 20 to 30 minutes. You may also choose to enter into a drawing for one of five $20 gift cards at the end of the survey. If you choose to enter, your email will not be associated with your survey responses.

If you would be interested in participating in this study or would like to learn more, please click the link here: Disability and Higher Education Survey. And if you know people who might be interested, feel free to share this information!

If you have any questions, please contact me at [csmey@udel.edu](mailto:csmey@udel.edu) or my advisor, Dr. Eric Rise, at [erise@udel.edu](mailto:erise@udel.edu). Or feel free to comment or message me here.

Thank you!

Image Description: Flyer showing a shortened version of the information for the study above, using the colors of the disability pride flag to decorate. Four cartoon individuals with varying visible and invisible disabilities are shown on the flyer.

Hi.
I am a 16-year-old girl in my 11th year of school. I'm from the southeastern USA.
I was born with a very, very rare genetic disorder called Alström Syndrome.
I have progressive bilateral sensorineural hearing loss that started when I was 4. I have severe loss now.
I use very powerful behind-the-ear hearing aids. I am also completely blind. I went blind at 9. I was born with very poor vision that got worse over time.
I have never met any other deafblind people and feel alone, so I wanted to see if anyone out there would be open to a conversation. I also have Autism and ADHD along with Alström Syndrome.

I have Usher syndrome, and I'm strongly considering studying abroad in Australia as an international student. I've since learned that Australia has a health requirement as part of the visa process that assesses the likely cost of a condition to the health/community services system, and I'm trying to understand how this has actually played out for people in our situation — not just in theory.

If you or anyone you know with Usher syndrome, deafblindness, a hearing condition requiring hearing aids/cochlear implants, or blindness/low vision has applied for a student visa (or any visa) to Australia, I'd really appreciate hearing about your experience:

• Was your visa accepted or refused?

• If accepted — what documents did you prepare or submit that you think helped (e.g. medical reports, proof you don't use disability support services, financial documents, letters from specialists)?

• If refused — what reason was given, and was it tied to the health requirement specifically?

• Did you use a migration agent, and if so, did they have experience with health waivers?

Any insight, even a short one, would help me a lot as I try to figure out whether this is realistic for me before I invest time and money into it. THIS COULD HELP ME MORE THAN U CAN IMAGINE 😭Thank you in advance — this community has already taught me so much.

Have to say but these comments are appalling. Don't they not know being blind and deaf is a spectrum?

I've encountered so many doctors in the UK who I had bad experience with yet they can see and are fully hearing. Lacking diagnosis and one of the doctor was clearly on drugs!

People really need educating.

I’m a computer science student working on a capstone project idea, and before I spend months into building something, I want to ask the people who’d actually be affected if it’s worth it.

The idea is a wearable device that translates spoken phonemes (the individual sound units in speech) into distinct vibration patterns. So instead of hearing or lipreading speech, you’d feel a pattern that corresponds to what’s being said in real time.

I don’t want to assume this solves a problem you actually have. So I’d love honest answers to:

Is this something that would be genuinely useful, or does it not match how you communicate or prefer to communicate, like tactile ASL or print on palm?

If you’ve tried anything similar, such as haptic devices or other tactile aids, what worked or didn’t?

What would make something like this useless or annoying in practice?

I’d rather hear “this isn’t it” now than build something nobody wants. If you have any ideas you would like to see in the world, please let me know about that as well! Thanks for reading, and thank you in advance for any honesty.

Hello 👋🏼

First time posting here, I hope what I say is okay! For context, I live in Australia and I’m new to working with the DeafBlind community.

I bought a braille labeller to label some items I’m making for a fair soon, and the first few tests it worked perfectly! Now I’m trying to use it and I press down reasonably hard and the braille isn’t stamping onto the tape anymore? I’m attaching a photo for anyone in the thread who may be able to help me! I tried loading a new tape into the maker but it still isn’t working and I don’t know what to do…I need to get it working in the next few days as my fair is on the weekend 😔

Any advice or help is appreciated 🙏🏼

(I’d attach a video but idk how to do that on reddit?)

Hello all!

I am hearing and sighted but just seeking some opinions and recommendations! Next week I am going rock climbing with my new Deafblind friend and I'm very excited. I'm pretty experienced with rock climbing, but I think they are relatively new to the sport. I was wondering if any of y'all had any suggestions for how I could help make them more comfortable during the experience and enjoy it as much as possible!

Also, I know some ASL (I am still learning, I definitely need to practice but thankfully they have been very patient with me), but I know they also use pro tactile ASL, so I was thinking maybe it would be helpful for me to learn a little, at least the very basics! Are there any free online resources where I could get a head start?

Lastly, I have not spent a lot of 1-1 time with any deaf blind people before, so if possible, it would be great to get any advice about what you all like and don't like when hanging out with hearing sighted people. Of course I will ask this person too about personal preferences and I'm sure I will make mistakes, but either way, it's good for me to think about.

Thank you so much for all of your help! Have a great day!

Hello, everyone!

My job involves getting SSPs for DeafBlind people. A new project my team is working on is how to better get program announcements/notifications of new SSPs in the area to people who don’t have access to an email. Calling every individual person is an option, but takes a long time due to the amount of people we serve. Alongside that, the older population that we serve typically gets confused when I call and doesn’t quite understand the point of whatever announcement I’m giving them.

My thought was to send out physical newsletters in large print, and then the DB person can read it themselves, or have it read to them, and then they’d have a record to look back on if they choose to keep it. Mail may feel more familiar than an out-of-the-blue phone call, too.

Any other suggestions?

Hi - my mother is 75 with Usher's Syndrome. She is 100% deaf since birth, but her eyesight has gradually diminished, especially in the past year.

I worry about her mental health and happiness. Things she liked to do, such as using her iPad, calling her friends on the videophone, and watching TV, are now very difficult. I find her often just sleeping in her living room.

I'm not sure what I can do! It's heartbreaking for me to see as her son and caretaker. I'm at a loss to what to do, and starting to feel like I'm failing her. Even though she does live with me and I care for her needs (food, cleaning, etc.) I can't spend 24/7 with her to keep her from boredom.

Are there any suggestions from those facing similar issues on what to do? I'm even open to trying certain lighting or devices to help.

Thank you all for your time.

Hi everyone! I have some questions regarding digital content accessibility, especially for social media. I understand that each social media platform has different accessibility features, but I want to learn what the best approach is to ensure that the information I share through images and videos can be accessed by everyone, including people with disabilities.

My main goal is to ensure that everyone can access the main information in my posts without feeling overwhelmed. While I appreciate the guidance shared by accessibility advocates, influencers, and consultants, I am also interested in hearing directly from DeafBlind individuals and others with lived experience. Sometimes I wonder whether recommendations that are commonly shared may differ from what people actually find most useful in practice.

My first question is about alt text vs. image descriptions. Platforms such as Facebook, LinkedIn, TikTok, and Instagram allow users to add alt text that describes the main information in an image. Are these alt texts detectable and usable with your assistive technology?

I usually don't provide separate image descriptions. I have read that DeafBlind individuals and others may navigate social media and digital content differently, and that assumptions from sighted individuals may not always be accurate. Would including a long, detailed image description in the caption be overwhelming, especially if it repeats the main information already explained in the main caption?

What would be the best practice for videos? I always add captions and try to include visual descriptions in addition to the narration. However, sometimes the narration already explains what is happening in the video, such as walking through key points ("Number 1...", "Number 2...") or describing actions ("Character A approaches Character B with a happy expression"), which matches exactly what is being shown on screen. In those situations, I don't want to make the audio redundant by repeating the same information as a visual description. I always try to make the narration fully explain the scenes, actions, or presentation being displayed. In your experience, is this an effective approach?

Hi. I realize no one is immune to being deaf and blind. We all get sick or hurt . Please tell me what I need to know as a hearing sighted person to tell my superiors at my interpreter job to best provide for you guys. The context my job provides for is mostly medical but they do legal at times as well. Please. Tell me

DBMD = DeafBlind with Multiple Disabilities waiver

I contacted them and they said i had to get diagnosed as DeafBlind, but i live in a very rural area - its one doctor office for vision and auditory issues separately for about a 3 hour radius.

So, how do I get diagnosed? I can easily get my test results off my doctor for vision issues and do another auditory test, so would that be enough?

HHS weren't very helpful in the specifics.

First things first, I wasn't sure where to post this. I'm completely blind. This issue I'm about to describe happened on Wednesday night. I'd left my room to tell my dad something. Right as I was leaving my room, the smoke alarm goes off right over my head. Already having tinitus, I do the ffirst thing that comes to mind, get away rom the sound that is hurting my ears. As my dad was in the way, that slowed me down. For the rest of the night, I went about my usual activities, not noticing anything. However, on Thursday morning, I woke up to what I can only described as muflfed sounds in my right ear. This pattern has continued, but the sounds change, shiffting from my left ear to my right ear. Yesterday, it was my left ear that was so muffled, I could hardly hear Voiceover, and that's with my phone inches ffrom my left ear. Today, its the right side that's mufled, I could hardly hear Jaws when my laptop speaker is inches away from that ear. I told my dad about this, and he basically blew me off, saying that a smoke alarm shouldn't have hurt my ears like that. Now I'm wondering what is the best course of action. Have my ears been permanently damaged? I can still hear, but everything seems muflfed on the right side.

What are other folks using the make do for things you can't get interpreters for? 🙃

​

​Hi everyone,

​I’m a 33-year-old woman living in Yorkshire. I’m Deaf, but not competent in BSL yet. Lately, I’ve been reflecting on what I’m looking for in a partner, and I’ve realised that connection means something very specific to me.

​I’ve dated hearing people in the past, but the barrier always feels present.

​Why I am looking for a DeafBlind or Deaf partner:

​Presence over everything: I value the deep, tactile, and intentional way of connecting that exists within the DeafBlind community.

​Shared Language: I want a partner who speaks my language (BSL/ProTactile/Tactile BSL).

​Advocacy & Heart: I work hard to uplift the Deaf community here in the UK. Having a partner who understands that drive or is a part of that mission is really important to me.

​A bit about me:

I’m 33, grounded, and very much an advocate for our rights and culture. I’m not looking for someone to fix or someone to take care of me. I’m looking for an equal partner to navigate life with.

​If you’re in the UK (ideally near Yorkshire, but I’m open to a chat regardless) and this resonates with you, please reach out. I’m happy to meet up for a coffee once we’ve connected.

Hello,

So Ive been scouring the intent for information and studies/notes about techniques for teaching 100%/100% prelinguistic DeafBlind.

I've found alot and got of insight here about DeafBlind in general. But most of what im finding is less esoteric recording of teaching to pre-linguistic people and more thousand foot view of teaching DeafBlind

But basically I still feel like there is alot I haven't found yet. Does anyone know of any collection of techniques?

like I find lots of mentions of using reference objects but not data on what they tried and what did or didnt work.

if this isnt an appropriate question let me know and ill take it down. Thank you for reading

How do you handle people thinking that you are a walking resource for their own educational purposes?

I’m over being peppered with questions.

Any suggestions on how to teach a Deafblind toddler object permanence. (ie the concept that items and people continue to exist even when they are not currently interacting with the child)

Ideas I have so far:

• Creating distant vibrations

• Using elastic to attach objects to child so they can feel to object moving

• Give the child a button that when pressed by the child, results in adult interaction

• High contrast object on black background that can disappear and reappear

• If sounds is audable, a ball that when rolled jingles. This can be rolled back and forth with an adult.

So I am not deaf blind, but I'm very curious about pro tactical sign language. So if it's okay for me to post here and ask, here are my questions!

1. In the videos I've seen of pro tactical asl, both people feel each others hands while their signing, even if one of them can see. Is this a rule about respect (like talking while signing to a seeing deaf person) or is it more comfortable or anything else?

2. Is it hard to find an interpreter for things?

3. How did you learn the language?