How Do You Feel About Those With C/apd Being Part Of The Deaf Community?

Or those with Auditory Processing Disorder referring to themselves as Hard of Hearing, when there's nothing actually wrong with their physical ability to hear? (The ones I'm referring to, who DON'T also have hearing loss.)

I ask as someone who is sometimes completely unable to understand spoken words. If the room is busy, if there's any background noise, if there's more than one conversation going on, or if I get stressed out, my ability to comprehend speech takes a nose-dive. Sometimes it hits completely randomly, even in situations that really shouldn't be a problem, like if a TV is on in an otherwise mostly quiet room. It doesn't matter how many times they repeat themselves (it's as if they're speaking another language, sounds garbled), and I cannot read lips, so I either require people to act it out, write it down, or move with me to a quieter area. Even if the space we were in wasn't all that 'loud' to a normal person, my brain has no ability to 'filter' out unimportant noises or sounds at all, and I hear absolutely everything, all at once, all the time.

That said, there are many struggles those that are Deaf/HoH go through that I will never experience. Such as absolutely needing to be tapped or having the lights flashed when someone wants to get my attention (so long as the other sounds around me aren't COMPLETELY drowning other sounds out), or needing lights to flash when someone knocks on the door. Requiring an alarm clock that vibrates my bed. Requiring TTY devices or video/text messaging to communicate (though, granted, it's 3x as hard for me to understand people over electronic devices even when it's completely silent).

Thoughts?

P.S. I should like to add that I've gotten very adept at being able to comprehend what I DO hear (I.E. what my brain processes), but I used to be absolutely terrible. I listened to music and transcribed lyrics over and over again to train myself to differentiate between sounds to better identify words when I was a kid. Had I not thought to do that (and I don't know why I even thought to), I would struggle on a daily basis following even basic conversations.

PersonaThief I wanted to give others a chance to answer. While I know some people in my Deaf community here, am not actively involved so can't give you any examples. Al I know as a hoh person w/likely CAPD <and I know you mentioned specifically people who have CAPD or APD but are not peripherally hoh/deaf> I've been welcome just fine.
But I understand that doesn't quite fit with what you're looking for. Just wanted to come back with some response for you.

dogmom said:

PersonaThief I wanted to give others a chance to answer. While I know some people in my Deaf community here, am not actively involved so can't give you any examples. Al I know as a hoh person w/likely CAPD <and I know you mentioned specifically people who have CAPD or APD but are not peripherally hoh/deaf> I've been welcome just fine.
But I understand that doesn't quite fit with what you're looking for. Just wanted to come back with some response for you.

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I appreciate the response! I was worried I wasn't going to get any at all...

I do worry, as someone without any physical hearing loss, that I won't be able to qualify for resources at my college -- but I'm hoping I'll be able to get a letter from my audiologist explaining things so that I can get a live captioner or a notetaker for my regular non-ASL-based classes.

I'm really glad you've been welcomed, though!

When I was little I had capd, but I didn't know, and little hearing loss. My dad always said I had selective hearing. I now have severe almost profound hearing loss. But a surplus of loud noise is around me, I can't figure out where it is coming from and then I get frustrated and shut down. Sometimes my hearing cuts out completely. Hope this helps.

Thanks, PersonaThief...and here's a link to an article from "LD Online" < "LD" of which CAPD is often - but not always- considered a part> regarding college accommodations: http://www.ldonline.org/xarbb/topic/9663

and this is another possibly useful link- does focus more on workplace but has an example in the text of a college student with CAPD: https://askjan.org/media/downloads/AuditoryProcessingACSeries.pdf

yeah I would for sure get that letter, ideally typed on office letterhead <sorry about font- it's because of the above PDF file, but this is me typing>.
I''d also see if you can sit down before the semester starts with "Disabled" Student Services Director/Supervisor/Manager and explain exactly what you need before they just "place you". Don't wait til things have already started and you already have an assigned counselor, if the office has more than one <when I went to my university in the late 90's, my office had one counselor who was also the Director/Supervisor>

oh, ok- never mind that font comment - when I was typing the response, text after the PDF link went to italics-

DeafNerdMommy said:

When I was little I had capd, but I didn't know, and little hearing loss. My dad always said I had selective hearing. I now have severe almost profound hearing loss. But a surplus of loud noise is around me, I can't figure out where it is coming from and then I get frustrated and shut down. Sometimes my hearing cuts out completely. Hope this helps.

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I absolutely feel you on all counts except the actual hearing loss. I hope to keep it that way, but it does run in the family. Best of luck!

dogmom said:

Thanks, PersonaThief...and here's a link to an article from "LD Online" < "LD" of which CAPD is often - but not always- considered a part> regarding college accommodations: http://www.ldonline.org/xarbb/topic/9663

and this is another possibly useful link- does focus more on workplace but has an example in the text of a college student with CAPD: https://askjan.org/media/downloads/AuditoryProcessingACSeries.pdf

yeah I would for sure get that letter, ideally typed on office letterhead <sorry about font- it's because of the above PDF file, but this is me typing>.
I''d also see if you can sit down before the semester starts with "Disabled" Student Services Director/Supervisor/Manager and explain exactly what you need before they just "place you". Don't wait til things have already started and you already have an assigned counselor, if the office has more than one <when I went to my university in the late 90's, my office had one counselor who was also the Director/Supervisor>

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The semester has already started, and because I jumped-in last minute, I haven't actually had a chance to sit down with DSPS yet and see what my options are. They offer live captioners and note takers and I was wondering if I could bring my own recording pen (I'd have to buy it, but it would be worth it), I just HOPE they'll listen when I get a written letter from my audiologist. No counselor yet, as I said -- jumped in last minute. I haven't even seen anyone about the classes I need to take, I just scooped up the first ASL class I could find. I'll be doing all of that for next semester.

oh, I understand - I hope they listen too! Do they have an online information PDF file or anything like that, that talks about your rights and responsibilities as a DSS client...you can look at ahead of time, maybe print out so you have with you when you meet w/the person?

My college disability person looked at me funny and asked me to leave because they're was nothing they could do....

That's terrible, DeafNerdMommy!

dogmom said:

That's terrible, DeafNerdMommy!

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I know I was pissed

DeafNerdMommy said:

My college disability person looked at me funny and asked me to leave because they're was nothing they could do....

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isn't their job to support you?

whatislife said:

isn't their job to support you?

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What do you mean?

DeafNerdMommy said:

My college disability person looked at me funny and asked me to leave because they're was nothing they could do....

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Then it was your college disability person that should had left the room and get someone that could of helped you! What a damn ass that person is! I would had been BS !

whatdidyousay! said:

Then it was your college disability person that should had left the room and get someone that could of helped you! What a damn ass that person is! I would had been BS !

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Well capd is not a disability and my hearing at the time, which was mod to severe, wasn't 'enough' for assistance. I am going back and unfortunately back to the same college and I will take in my new audiegram. Haha maybe now I am 'deaf enough' for her.

DeafNerdMommy said:

Well capd is not a disability and my hearing at the time, which was mod to severe, wasn't 'enough' for assistance. I am going back and unfortunately back to the same college and I will take in my new audiegram. Haha maybe now I am 'deaf enough' for her.

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I was quoting what you called the person you said they were a " college disability person" .

I know this thread is a few months old, but I kind of wanted to chime in here instead of making a new separate thread for APD stuff. I'm kind of wondering about APD acceptance in the Deaf community for "hearing" people with APD, myself. My own experiences have been mixed.

I don't consider myself hearing. I never have. Since I learned the term, I've considered myself Hard of Hearing (though until college, the hearing status label hearing people who knew me gave me was not "deaf" or "hard of hearing" - it was "20% hearing loss" or, more rarely, "80% hearing"). When I was born, I had constant ear infections that lasted until I was 2 and had tubes put in my ears - as a result of ear infections, I lost a chunk of hearing ability and the label "20% hearing loss" was officially given to me. My whole life, every single piece of hearing-related problems was attributed to slight hearing loss. I couldn't quite understand the teacher. I struggled to keep up in group conversations. I relied heavily on lip reading. I used reading and writing to compensate for what I was missing. I couldn't regulate the volume of my voice (no matter how much I got yelled at or made fun of for speaking too loudly or too quietly). I couldn't tell what volume anything was at (my volume detection goes like this: can't hear it, can hear it, can hear it and feel the vibrations pounding in my ears and/or body, and hurts my ears - and what actual volume falls under any of those categories can differ day to day. Even now a volume I wouldn't respond to yesterday is so loud it hurts today). I didn't respond to most sounds from outside the room I was in unless it was extremely loud and alarming. I couldn't reliably hear what was said over a loudspeaker. I couldn't tell what background music was playing in stores and elevators and often didn't realize there was any. I was drawn to ASL and both my parents signed (only to each other because they thought they were being sneaky using a language the kids didn't know to talk to each other in front of me and my brother - yeah, no. by the time I was 6, I was able to understand whatever they signed - when I was 6, they stopped signing in front of me, but I stole all their ASL books and read them and copied the signs over and over though I had no one to sign with).

In college, I took ASL classes. I tried to introduce myself as hard of hearing but my Deaf professor told me I had to commit to "Deaf" or "hearing". I felt like a liar saying I was "Deaf" so I said "hearing". I felt like a liar saying that, too. In the Deaf community around me in that city, that was the general opinion. People seemed to care more about which label you used rather than actual level of hearing loss. I was more afraid of being accused of faking being deaf than faking being hearing, so I chose to fake being hearing (since I've been doing that forever anyway). I didn't realize how much I was missing in my hearing classes until I had Deaf students with interpreters or captionists in them. I kind of piggy-backed on their services. (The Deaf students were always more than happy to share if it helped me but it made the interpreters uncomfortable - but not the captionists for some reason). It did help. A LOT. I understood things the first time and didn't have to rely so heavily on the textbook. So I went to an audiologist to see if I was deaf enough to get services. I wasn't. In fact, the audiologist told me my hearing was "normal for my age" regardless of childhood hearing status. I tried to ask why I couldn't understand things or hear background music or announcements or reliably use a telephone or sense what volume things were at but his answer was just "Well the test doesn't account for real-world situations and if your physical ability to hear in a lab is fine, we can't do anything". Years later, I learned about APD and realized that's probably the problem.

By that time, I was at a different college. The Deaf community in my new school encouraged me to drop the hearing act and embrace my non-hearing status whatever way I saw fit. They also encouraged me to go to the place on my campus that did services for Deaf/HoH students and see if they'd accept someone with APD. I went back to an audiologist to ask about APD and the answer was "We tested for that and you don't have it" - which was not true and I knew it wasn't but I wasn't prepared to call them out. Turns out my insurance doesn't cover any audiologists qualified to evaluate for and diagnose APD. If I want an official diagnosis, I have to shell out $3,000-4,000 out of pocket just for the evaluation. I still feel nervous about raising my hand in my Deaf Studies classes whenever the teacher asks how many Deaf/HoH students there are, though. I'm still afraid of being accused of pretending to be Deaf even though, in general, the community here is really accepting of people with APD using hearing status-related identity labels to describe their non-physical hearing status/non-hearing identity. Despite this, I'm the only person with APD I've met in person that uses a non-hearing identity label at all.

So yeah. I'm pretty open about APD and my HoH identity and most of the backlash I've experienced so far comes from the fact that I call myself "Hard of Hearing" instead of "Deaf". But I'm still too afraid to pursue a Deaf identity for myself despite the strong encouragement from the Deaf students on my campus. I haven't gotten any encouragement or discouragement from any Deaf professors since that first one, though (well, sort of - there was one that I avoided saying I was HoH to because of her reputation of looking down on oral Deaf/HoH people even those raised oral but are no longer oral and she even seemed to include late-deafened people with English as their native language as raised oral and she was also super ableist in general).

As someone who is HoH and has APD, I think it's ok for them to call themselves HoH because I think having auditory processing issues just doesn't make you hearing.

Back to the original question. Yes, I think those with APD should be welcomed in the deaf community because the inability to hear impacts those with APD just as it does for those with actual physical hearing loss, if not more. Also, I think that the resources (hearing aids, ASL, deaf schools) are much more available to those who are HOH and deaf than for APD sufferers.