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    Community Voices

    Stapes surgery: your thoughts/experience
    #Deafness #autoimmune #MyastheniaGravis #Surgery #ChronicIllness #sjogren ’ssyndrome #POTS

    I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
    #Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss

    4 people are talking about this
    Community Voices

    Hi, I'm new here. I have already shared some of my frustrations on here. Looking forward to meeting others.

    <p>Hi, I'm new here. I have already shared some of my frustrations on here. Looking forward to meeting others.</p>
    10 people are talking about this
    Community Voices
    Brittany Johnson

    'Craig of the Creek' Show Showcases Black American Sign Language

    Cartoon Network’s Emmy, GLAAD, and Annie nominated show “Craig of the Creek” follows a young boy, Craig, and his friends’ adventures around their favorite creek, and it recently highlighted Black American Sign Language (BASL) in one of their episodes. In the episode, Craig’s friend Jackie speaks in a dialect of sign language, BASL, which is different from American Sign Language (ASL), due to cultural and historical differences which is credited to the segregation of deaf schools.  Jackie communicates with his dad, telling him that he’ll be safe when he’s out, and all of Jackie’s friends communicate to him using BASL throughout the clip and episode. The animation team consulted with Black Deaf Advocates, a deaf support group, for the episode. BASL has recently been talked about more, which some credit to sites like Tik Tok where users like Nakia Smith have spoken about BASL, the key differentiations between BASL and ASL, while teaching others how to sign it. A few of the major components that separate BASL from ASL are: 1. Facial expressions. Facial expressions tend to play a larger role in conversation when it comes to BASL versus ASL. Whereas both dialects utilize facial expressions, in BASL the expressions are a part of the signing itself. 2. Two hands are used instead of one. In BASL, two hands are typically used to sign instead of one hand primarily. 3. BASL utilizes the forehead more versus the lower body. When signing with BASL, many sign placements utilize the forehead , versus solely using the lower parts of the body. All of this is seen in the “Craig of the Creek” episode where Jackie and his father are communicating, along with the rest of his friends. BASL has been overlooked and ignored for generations, and we’re excited to see that it’s finally getting the attention and recognition that it deserves.

    Christina Lisk

    Why Hard-of-Hearing People May Speak Loudly

    To the Man Who Tried to Shush Me, I don’t know how much you heard and understood when I complained to my partner about you and how you tried to quiet me down. The way you waved your hand and said “talk quieter,” though to me, it sounded as though you said, “trk qrter.” I saw the way your ugly lips moved and your hand gesture, and that was how I knew what you were trying to say. You didn’t give a damn that I was trying to watch my diction, or how often I have to watch my diction to accommodate everyone like you. Projection is how I understand my diction in full instead of slipping back into old habits pre-speech therapy. In crowded restaurants, such as the one we were in, my speech becomes harder to hear even inside my own head. It becomes a strain to “trk qrter,” as hearing people like you demand, yet you never consider how much strain goes into fulfilling your entitled wish. Yes, I say entitled, because of how much we as hard-of-hearing people strain ourselves to accommodate you. We go into speech therapy to become what you consider “well spoken,” lest we risk ridicule and exclusion. Conversations with you involve listening to sentences filled with hole punches, and all the while, every word is dulled with sandpaper. If there’s more noise in the background, it’s like listening to your Swiss cheese sandpaper voice in a fog. To appear more “acceptable” in your view, we inference and scramble for context to clarify words, all while making our speech “acceptable” enough so we’re not called “stupid” or “r*tarded.” Hearing aids cannot solve these problems, as you might think, because inferencing is counted as “hearing” in a hearing test. The list of words used for the test is narrow, and after a lifetime of testing, it’s easy to understand that “sssbll” means “baseball.” Tests of pure tones mean you are searching for the tiniest beep, and are expected to strain in the process. Even the littlest blip counts as “hearing,” no matter how much strain is involved to get it. The test is black and white, where either you hear nothing or you’re “fine.” There is no room for the struggle that comes with Swiss cheese sandpaper in a fog. Even if hearing aids and a test with more shades of gray could fix the problem, the lack of insurance coverage puts new hearing aids out of reach. While my model is functional enough for me to participate in everyday life, it’s 11 years old and heavily outdated. The new ones start at $1500, if someone is lucky, and can easily go up to $3000. Did I mention too that hearing aids aren’t covered by health insurance because they’re considered “elective”? The insurance companies ask, “why can’t you get surgery or a cochlear implant?” I’ve had 10 surgeries to fit into your hearing world, and my loss comes from severe scarring of the eardrum from infections and a cholesteatoma. A cochlear implant won’t help me accommodate you. I thought about telling you all of this in the restaurant, but I was so fuming that I didn’t yet have the words to tell you everything I’ve said now. All I could do what vent my rage with my partner, and not give a damn whether or not you understood what I said. By the time you left, I had enough of straining to hear. That’s why, when you said “fnk u fr lryng ur viz,” I responded with a frustrated face. I hoped you would project for a clearer tone, and I wouldn’t have to pick apart your voice. Such was not the case as your lips moved repeatedly with the same tones, but I was too tired to read them anymore. Tired not just from straining to hear in conversation, but tired from the everyday contradiction. How our speech must be “just right” to fit into your world, and we must fatigue ourselves the moment our compensation becomes your inconvenience. Someday, you will know this world too, as hearing loss is inevitable with age. You will feel the struggle to speak and keep up in conversation. Hearing tests will fail you too, and you will be left either in debt or isolation. What you gave me today will come back in the form of another man trying to shush you, and the forced role of accommodator. It’s a lot easier to tell you over a computer, where I don’t have to strain to hear or worry about audible speech. Should I see you again, I’ll put this letter in your hands, as well as anyone who acts like you. Perhaps then, you will understand, and see how my strain will become yours. With the utmost fatigue, Christina

    Jade Wright

    10 Things Under $100 That Help With Functional Neurological Disorder

    Living with a disability can be expensive and aids such as wheelchairs or bathroom renovations can really break the bank to make life livable. Here are ten of the most useful tools and services I use to make my life with functional neurological disorder, sensory issues, and a disorder of the corpus callosum easier to cope with. 1. Spotify and Audible Subscriptions These might seem like obvious answers to this question, but when my body refuses to co-operate and my fine motor skills go out the window? Spotify and Audible have saved the day, grounded me, and distracted me from the tics and grunts that fill my days. As an added bonus, living in regional Australia means I have to travel for specialist appointments quite often and these apps are an excellent companion on those long drives to the nearest big city. 2. Earplugs (and learning how to put them in properly) Earplugs made of either silicone or foam have been a disabled girl EDC staple for me for a long time. Cheap and effective, these earplugs cushion the blow of loud, overwhelming spaces and make trips to the grocery store possible. An important note though is that proper insertion of earplugs makes a world of difference! Check out the short clip below from the National Institute on Deafness and Other Communication Disorders for a step-by-step guide to getting a proper seal with your earplugs. 3. Laminated Emergency Card This one is essential for giving me the confidence to go out in public knowing I will be taken care of during a pseudo-seizure — and it’s practically free! I have written out a short set of need-to-know facts on a business card for strangers to read if I am unable to communicate with them properly. I used some clear sticky tape to cover the card completely and make it more durable. You could also laminate the card. This item gets tucked in my phone wallet or on a lanyard with sunflowers on it (a common signal at airports internationally that a person has additional needs when traveling.) Now, when I leave the house I know that my day won’t end with an unnecessary hospital visit! 4. Medical ID Band In this same vein, a Medical ID band gives me the confidence to leave the house, knowing that in a true emergency, paramedics will understand my health conditions and treat me in the most effective way possible. This one is especially important. Mostly though I wear this band to assure myself that even if the worst case scenario really does come to pass, I have the best chance of surviving it. 5. Medication Container for Keyring I have PRN. That stands for Pro Re Nata which is some medical Latin for “take as needed medication.” As another self-assuring measure, I like to have these medications on me at all times while in the stress-inducing environment which is the outside world. So I found a small metal container with an O-ring seal that attaches to my house keys. This small item keeps my pills dry while also being conveniently unforgettable when combined with my house keys. 6. Stuffed Toy Heat Pack Weighted soft toys that double as reusable heat packs? Yes, please! These toys come in a variety of sizes and species (including unicorns!). snuggly and comforting as well as soothing for sore joints or aching innards. This is an upgrade from your favorite teddy that is well worth the investment. Add a few drops of essential oils to the microwaveable pouch and you’re got a scrumptious sensory experience! 7. Pop-Up Flower Cards One of the benefits of connecting with disabled friends is that you meet a lot of people who are going through the same struggles as you. However, this also might also mean more visits to those friends in hospital wards. I like to have a stack of cards that I can send or hand-deliver to flower-free wards that open up and become a vase of sunflowers or a jacaranda tree. This gift takes up next to no space in your drawer and can really make someone’s day while they’re stuck in the hospital. As an added benefit? You’ll make friends with the nurses too who will appreciate not having to go find a vase for you during hand-over! 8. Harmonica This is a bit of an odd one, especially since I can’t actually play the harmonica, but hear me out. If you struggle to “focus on your breath” to ground yourself and have found that you never really seem to get much comfort from deep breathing? Try getting an inexpensive harmonica. Since harmonicas make a sound both on the in breath and the out breath, it’s a sensory cue of how your breath is going. I try to pucker my lips to include two or three notes, and breathe as quietly and consistently as I can. This auditory cue really helped me to distinguish between fast, shallow breaths and deeper ones. You can even get harmonica necklaces for a portable reminder to pause and open your lungs every once in a while. 9. Webster-Paks or Pill Organizer I used to go to the cheapest, franchise pharmacy I could find and resigned myself to the judgmental looks from clerks and customers. Why does such a young person have so many medications? I bet she is selling them. How sad… and on and on. That was until I swapped to a family-owned pharmacy with the added benefit of Webster packs. Now, every month, the pharmacist portions out my medication into one convenient sheet. This is especially useful for the tiny pills when my fine motor skills are being tested by FND. Rather than popping out four, tiny tablets, I know to just press open the bubble labeled “BEDTIME” and we are off to the races. Another benefit of this system is if you have carers dispensing your medication, you need not worry about getting the wrong doses! The transition to your local, family pharmacy, despite the increased cost, is extremely worth it in my opinion. 10. Flowers for Someone Who Helps My mum is an unpaid carer for me. She is an absolute saint who makes my life liveable in a very real sense. For this reason, when I learned that Mum really appreciates fresh flowers in the home, they became a must-have item for keeping the peace. Keeping Mum happy and letting her know I appreciate everything she does for me through flowers is my small way of giving back to a woman who gives me so much.

    'Mickey Mouse Funhouse' Furthers Inclusion With New Deaf Character

    Fans of Mickey Mouse who use ASL to communicate will be seeing themselves represented by a new character, Fig, a gnome friend who is deaf. Fig made his debut in Disney Junior’s “Mickey Mouse Funhouse” earlier this month. A drummer and music enthusiast, Fig and his sister Olive help Minnie and Daisy understand how he communicates. “The Music of the Seasons” will re-air throughout the month of May and beyond and Fig will appear in additional upcoming episodes alongside Mickey and his friends. RespectAbility Vice Chair Delbert Whetter and his brother Jevon Whetter, who are both deaf, consulted on the development of this character. “Jevon and I feel so privileged and honored to connect young deaf and hard of hearing children with such iconic characters as Mickey and Minnie using ASL, a language that is visually accessible to them,” said Delbert Whetter, who has more than 20 years of experience in producing animated feature films. Kate Moran, who wrote the episode, has close family members who are deaf and strives to bring more inclusion to the deaf community with her work. “We need to see everyone in children’s media,” Moran told Romper. “Expanding the represented world means that when a child meets a child who is deaf, for example, they will have some understanding of deafness and what that means, and be able to communicate and play and become friends.” Moran spoke about working with Whetter in an interview with The Laughing Place. “My focus was to make sure that I got the story right,” she said. “We worked with really amazing consultants from RespectAbility who made sure that not only was the story told as correctly as possible, but also that, that translated visually too.” In addition to ensuring the accuracy of Fig’s portrayal, the Whetter brothers helped ensure that the character of Fig is not defined by his deafness. “Our familiarity with the animation production workflow, and how animators work, was very useful in helping to ensure that the ASL dialogue performed in this show is optimized for both dramatic impact and production efficiency,” Whetter said. The Whetter brothers have consulted on a number of animated children’s series, including DreamWorks Animation’s “Madagascar: A Little Wild” and Disney’s “Big City Greens.” They are intentional in choosing ASL signs that are appropriate for young singers with a developing ASL vocabulary. “Without a doubt, there is a clear uptick of interest and enthusiasm for deaf/hard of hearing animated characters and ASL dialogue, and for other characters with other disabilities as well,” Whetter added. Geared to kids ages 2-7 and their families, “Mickey Mouse Funhouse” features Funny, an enchanted talking playhouse voiced by Harvey Guillén (“What We Do in the Shadows”), who leads the Sensational Six on magical adventures. The series demonstrates imaginative play and imparts age-appropriate social and emotional lessons about friendship, creativity, and ingenuity. Meet Fig, his sister Olive, and the rest of their gnome friends in “The Music of the Seasons,” a brand-new episode of Mickey Mouse Funhouse that premiered Friday, May 13th, at 8:30 a.m. ET on Disney Junior. This episode will be rebroadcast throughout the month of May on both Disney Junior and Disney Channel.

    Community Voices

    Any one here Who is deaf and Would like to be friends im New to the app!

    5 people are talking about this
    Community Voices

    10 items under $100 that changed my life with a disability #FunctionalNeurologicalDisorder #AgenesisOfTheCorpusCallosum

    Living with a disability can be an expensive and aids such as wheelchairs or bathroom renovations can really break the bank to make life more liveable. Here are ten of the most useful tools and services I use to make my life with Functional Neurological Disorder, sensory issues and a disorder of the corpus callosum easier to cope with.

    1. Spotify and Audible subscriptions


    These might seem like obvious answers to this question but when my body refuses to co-operate and my fine motor skills go out the window? These apps have saved the day, grounded me and distracted me from the tics and grunts that fill my days. As an added bonus, living in regional Australia means I have to travel for specialist appointments quite often and these apps are an excellent companion on those long drives to the nearest big city.

    2. earplugs (and learning how to put them in properly)


    Earplugs made of either silicone or of foam have been a disabled girl EDC staple for me for a long time. Cheap and effective, these ear plugs cushion the blow of loud, overwhelming spaces and make trips to the grocery store possible. An important note though is that proper insertion of earplugs makes a world of difference! Check out the short clip below from the National Institute On Deafness and Other Communication Disorders for a step-by-step guide to getting a proper seal with your earplugs.

    -
    3. Laminated Instruction cards


    This one is essential for giving me the confidence to go out in public knowing I will be taken care of during a pseudo-seizure- and it's practically free!

    I have written out a short set of need-to-know facts on a business card for strangers to read if I am unable to communicate with them properly. using some clear sticky tape to cover the card completely and make it more durable, This item gets tucked in my phone wallet or on a lanyard with sunflowers on it (a common signal at airports internationally that a person has additional needs when travelling.) Now, when I leave the house I know that my day won't end with an unnecessary hospital visit!

    4. Medical ID Band


    In this same vein, a Medical ID band gives me the confidence to leave the house, knowing that in a true emergency, paramedics will understand my conditions and treat me in the most effective way possible. This one is especially important.

    Mostly though I wear this band to assure myself that I even if the worst case scenario really does come to pass? I have the best chance of surviving it.

    5. medication container for keyring


    I have PRN. That stands for Pro Re Nata which is some medical latin for "take as needed medication". As another self-assuring measure I like to have them on me at all times while in the stress-inducing environment which is the outside world. So I found a small metal container with a O-ring seal that attaches to my house keys. This small item keeps my pills dry while also being conveniently unforgettable when combined with my house keys.

    6. stuffed toy heat pack


    A weighted soft toys that double as reusable heat packs? Yes, please! These toys come in a variety of sizes and species (Including unicorns!). They are snuggly and comforting as well as soothing for sore joints or aching innards. This is an upgrade from your favourite Teddy that is well worth the investment. An a few drops of essential oils to the microwaveable pouch and you're got a scrumptious sensory experience!

    7. pop-up flower cards


    One of the benefits of connecting with disabled friends is that you meet a lot of people who are going through the same struggles as you. However, this might also mean more visits to those friends in hospital wards. I like to have a stack of cards that I can send or hand-delivery to flower-free wards that open up and become a vase of sunflowers or a jacaranda tree. This gift takes up next to no space in your drawer and can really make someone's day while their stuck in hospital. As an added benefit? You'll make friends with the nurses too, who will appreciate not having to go find a vase for you during hand-over!

    8. harmonica
    This is a bit of an odd one, especially since I can't actually play harmonica; but hear me out. If you struggle to "focus on your breathe" to ground yourself and have found that you never really seem to get much comfort from deep breathing? Try getting an inexpensive harmonica. Since harmonicas make sound both on the in breath and the out breath, it's a sensory cue of how your breathing is going. I try to pucker my lips to include two or three notes then breathe as quietly and consistently as I can, for as long as I can. This auditory cue really helped me to distinguish between fast, shallow breaths and deeper ones. You can even get harmonica necklaces for a a portable reminder to pause and open your lungs every once in a while.

    9. Webster Packs
    I used to go to the cheapest, franchise pharmacy I could find and resigned myself to the judgemental looks from clerks and customers. Why does such a young person have so many medications? I bet she is selling them. How sad... and on and on. That was until I swapped to a family-owned pharmacy with the added benefit of Webster packs.

    Now, every month, the pharmacist portions out my medication into one convenient sheet. This is especially useful for the tiny pills when my fine motor skills are being tested by FND. Rather than popping out four, tiny tablets, I know just press open the bubble labelled "BEDTIME" and we are off to the races. Another benefit of this system is if you have carers dispensing your medication, you need not worry about getting the wrong doses! The transition to your local, family chemist, despite the increased cost is extremely worth it in my opinion.

    10. flowers for mum


    My mum is an unpaid carer for me. She is an absolute saint who makes my life liveable in a very real sense. For this reason, when I learnt that mum really appreciates fresh flowers in the home? It became a must-have item for keeping the peace in this house. keeping mum happy and letting her know I appreciate everything she does for me through flowers is my small way of giving back to a woman who gives me so much.

    Community Voices

    EPIC Players presents The 25th Annual Putnam County Spelling Bee in NYC!

    <p>EPIC Players presents The 25th Annual Putnam County Spelling Bee in NYC!</p>