Accessibility A Legal Right


Hey Everyone!

This is a great article from Rikki Poynter and it hits home with me, too! Many of my friends who live with either Deafness/Hearing loss &/or disabilities requiring the use of wheelchair,walker or cane etc, may feel a connection to the stress that Rikki Poynter shares in this article.

Some of us are feeling also the stress of not have accessibility to proper medical care for our high impact chronic pain illnesses. This has been constant since the CDC Guidelines were implemented in 2016, without any pain physicians present at the discussions.

I wanted to share this article because I can feel for her experience and so many people don’t “get it”. Here’s the article: http://www.rikkipoynter.com/articles/event-accessibility

For information or questions regarding the ADA or “Americans With Disabilities Act”, please visit: Link to the ADA website

You can follow Rikki Poynter at Twitter, Instagram and Youtube at: https://www.youtube.com/user/rikkipoynter

And on Twitter:
Rikki Poynter on Twitter
(Check out Rikki Poynter on Twitter: I’m deaf and disabled and, you know, stuff. YouTuber & Public Speaker | #NoMoreCRAPtions | PATREON: https://t.co/BsMiMuxDF5 | rikkipoynter@gmail.com)

Link to Rikki Poynter on Instagram

Just a Photo of me with my purple glitter aids
Me with my family in town, on a Summer day
PEASE FEEL FREE TO FOLLOW ME ON SOCIAL MEDIA:
TWITTER:
1) http://www.twitter.com/ASLSuzyQ
2) http://www.twitter.com/ppl_inpainunite
3) http://www.twitter.com/RASEforCRPS
4) http://www.twitter.com/DeafNDizzy
FACEBOOK:
1) http://www.facebook.com/ASLSuzyQ
2) http://www.facebook.com/RASEforCRPS
3)
http://www.facebook.com/peopleinpainunite
TIKTOK:
1) http://www.tiktok.com/asl_suzyq
*(2nd account is: http://www.tiktok.com/asl_suzyq2
INSTAGRAM: http://www.instagram.com/ASLSuzyQ
TUMBLR: http://www.tumblr.com/ASLSuzyQ
MY BLOG: “Tears of Truth”: @tearsoftruth.com or http://www.wordpress.com/tearsoftruth
SNAPCHAT: http://www.Snapchat.com/jewelrymkr ( or Jewelrymkr )

Cholesteatoma, Deafness And ASL


Have you always wanted to learn American Sign Language, but didn’t know where to start?

Well, the best place to learn all of the rules, parameters and the full language, is from a certified, Deaf ASL professor. You should do that if you are able to at all. You should also try to find a Deaf community to hang out with and go to Deaf events. Most of the communities are so amazing and we welcome all levels of ASL. We are excited for you to learn and happy to help. If you want to do that, but you don’t have the money or the venue to take those special classes; the next best place to start, is by heading over to YouTube.

There are several great places online where you can get started learning for no cost. Lifeprint.com is just one example, Handspeak.com is another, but first I wanted to let you know that I do have some “ASL Basics- Vocabulary” lessons at my YouTube channel :

My YouTube Channel @ASLSuzyQ

The important thing is that you don’t just learn vocabulary, although that’s a great place to start. You need to learn about the language, culture, community and its history! I do have several videos that are a little bit about each of these things. I have one video about “How to get a Sign Name”. There are other videos that include “Deaf President Now” movement in the 1980’s. Also the Sign Language community that was living in Martha’s Vinyard, Massachusetts; in the early 18th century until 1952.

I’ve been using ASL since I was 11 years old. I was babysitting and hung out with a Deaf family of 6. I grew up mildly Hard of Hearing due to recurrent ear infections and numerous ruptured ear drums with scarring. I always had to sit in the front of the class because I couldn’t hear well. Later, when my elementary school performed hearing tests, they informed my parents that I needed tubes in my ears because I wasn’t hearing well. I had multiple operations from ages 7 through 12 or 13 years. However, I did not get hearing aids until much later.

I went to Deaf school events, such football games at MSD (Michigan school for Deaf). I fit right in and felt comfortable. I later went to college and a group of 16 Deaf students in the dorms, were my best friends. We watched “General Hospital” with closed captioned. We went dancing and had some great times together!

Later on, I took a break for a year and a half & went to work at a school in Arizona with Deaf preschoolers. I loved that job. I was ecstatic to find out that I’d beaten out several other candidates for that position because of my skills. I also worked at a Deaf relay center called ADARA or “Arizona Deaf Assistance Referral Association” while I was living in Scottsdale.

After working there for about a year and a half, I went back home to finish my degree in Sign language studies & Interpreting. I then got hired as an educational interpreter for a school district and stayed on Interpreting for my Alma Mater. I got married, had two daughters and 8 years later I became a single mom.

I needed to take care of my girls and I immediately got a full time job with full benefits at the University hospital. I was a “Secretarial float” & wore a pager so that I could be notified when Deaf clients/patients needed me to Interpret for them. I loved my job. At that same time, I was an Interpreter at a school district nearby. I also volunteered as a pro tactile interpreter for Deaf/Blind medical screening events a few times each year.

I continued attending workshops at my Alma Mater and one in particular stands out in my memory. I met an amazingly intelligent and kind man who impacted the rest of my life, in a good way! His name is Art Roehrig and he was a Deaf/Blind guest speaker at one of my most memorable workshops. He told stories about how he’d grown up at a residential Deaf school and discovered that he had Ushers Syndrome, when he was a teen. He shared jokes and told us all about how he was living independently. He was a public speaking and later worked at and then retired from Gallaudet University. I still email with my long time friend, Art.

Back in 2002, I was involved in an Catastrophic car accident. A man ran through a red light and I suffered multiple injuries, surgeries and a Traumatic brain injury. I went through 11 surgeries up until now, and 3 years of TBI (brain injury) rehabilitation. I am left with many medical issues, including several high pain chronic illnesses, chronic pain, a stroke, heart attack and I received a permanent dual chamber pacemaker. Since the car accident, I’ve had vision issues, such as “halo vision” and a Convergence Insufficiency. Also, due to the TBI, my hearing declined even more. Prisms were placed in my eyeglasses for quite awhile and I was fitted with two hearing aids for mild.

My hearing declined over the years and the past 4-5 years it was rapidly declining more. I was waiting until my husband retired this past year, to be fitted with new hearing aids. They’re so expensive ($6,000.00), so I had to wait until we got new insurance, that would help with the cost.

When I went for the hearing test, they were concerned because my bilateral hearing loss had very much worsened. The right side was also now a mixed hearing loss and not only sensory-neural. The ENT ordered a CT scan & later in May 2019, I was diagnosed with an auditory tumor, called a Cholesteatoma. I had a very scary & difficult brain/inner ear surgery on July 26, 2019. I got two new & improved digital hearing aids. But they’ve been nothing but trouble with one thing or another since I got them! We had to pay $1,500.00 of the cost plus $150.00 for the ear molds (which now both have split on me and I’ve only had them for a few months). I’m ready to give up on them.

My hearing bones, eardrum & Mastoid were all diseased from the tumor. I received a Tympanoplasty, a Mastoidectomy (called a Tympanomastoidectomy) & a titanium Anvil, a prosthetic ear-bone. I’ve had Vertigo, a tingling, droopy top, right lip & my tongue has no sensation or taste on the right side, since that surgery this Summer. Oh… and I’m Deaf in my right ear and Moderate/severe HoH in my left ear. The deafness isn’t my problem. The fact that I have to live a lifelong battle with a reoccurring tumor, (that’s like a cancer in the way that it grows into the brain & can kill you. Also in the way it can repeatedly grow back); that is my problem! I have to go back in Spring 2020, for another of the same surgery, possibly. The micro Neuro-Otologist surgeon, told me “to be prepared”. This thing is the “Never ending story”. An endless battle that results in multiple painful & scary surgeries and deafness. But as I said, deafness is not the problem. I’ve been part of the Deaf community since age 11. It’s the lifelong battle with more pain & surgeries on top of the current pain…..that is the major issue for me.

If you’d like to follow me in social media, I will leave the links for you, below:

1) http://www.instagram.com/ASLSuzyQ

2) http://www.facebook.com/ASLSuzyQ

3) http://www.twitter.com//ASLSuzyQ

4) http://www.youtube.com/ASLSuzyQ

5) http://www.tiktok.com/asl_suzyq

6) http://www.facebook.com/groups/ASLExpress (*This one is an ASL info, & help group)

My new Hearing aids:

New Card Helps Deaf Communicate With Police


Hello

So I found this interesting article and I thought some of my fellow Deaf/Hoh persons might want to read about it. The link is below and it’s about a card for Deaf/Hoh individuals to have & use when trying to communicate with the authorities. This article is from Minnesota. I hope you enjoy reading it!

www.google.com/amp/s/patch.com/minnesota/northfield/amp/27492735/new-card-helps-deaf-drivers-communicate-minn-police

The Lion King -ASL


Hello Luvs!

I thought you might enjoy a bit of something light, to cheer you. If you’re like me, the “Lion King” was my favorite of all Disney movies. I have here, “The Circle of Life” in American Sign Language-(ASL), from that Movie! I also have below, “Can You Feel The Love Tonight”? In ASL….I hope you enjoy! *Please “Like”& “Subscribe” on my YouTube videos & “click the little bell 🛎. This way you’ll be notified when I post a new ASL cover song video, to my YouTube channel. I’m trying hard to grow my audience. Thank you so much!! Here’s the direct link to watch ” The Circle of Life” In American Sign Language: “Circle of Life” ASL

Just for your information, at the beginning, of “Circle of Life”, I Sign “look over there! Look over there”… then I name several wild animals, such as: Lion, tigers, giraffe, elephant, antelope, hyena etc. Then I show them all coming forward as they did for Simba when they presented him at Pride Rock. Then I sign “we all must protest against the Lion named Scar. We will win & there will be peace again!!” (This is what I’m signing in parts where there is just music). Then I’m signing the song itself, to the best of my abilities.

Secondly, I have also done the song “Can You Feel The Love Tonight?” In ASL. Here’s the direct link to that song done in American Sign Language: “Can you Feel The Love Tonight?” ASL

I hope you enjoy these because they gave me pleasure to make it! Thank you so much for following “Tears of Truth”. Thank you also for Subscribing to my YouTube channel!

Silent World


September marks the beginning of Deaf Awareness Month 2019. In light of this, I will be bringing you a few blog posts during this month, about the subjects of deafness, Deaf vs. deaf, ASL, Deaf history & Deaf culture, etc.

Today, I want to take a moment to truly introduce another part of my “story” to all of you. Most of you know much about me already. You also know a lot about my pain journey already, if you’ve been following this blog at all. But you may not know much information about some other aspects of my journey. You might have seen my songs done in ASL (American Sign Language) at my YouTube channel: ASLSuzyQ .

I’ve been married for 23.5 years to my soul-mate & the Love of my life, Craig. He’s been an Elementary school teacher for 40 years now & is retired as of June 2018. We have 2 daughters who are married and 3 granddaughters & 1 grandson: Olivia-6yrs, McKenzie-5yrs. & Kiera-3 yrs & Bryce-9 months. I am high Moderate Hard of Hearing (on left) & (mostly) Deaf (on right). I had been HoH (Hard of Hearing) since 2002. But in May 2019, I was diagnosed with an auditory tumor, called “Cholesteatoma”. Which turned out to actually be a rare disease because it often times comes back. It has caused pretty much total silence in my right ear. The Cholesteatoma (More information about Cholesteatoma ) had diseased my eardrum, hearing bones & mastoid by the time it was discovered & removed surgically on 7-26-19.

In short, I will tell you that I started out in life, totally hearing. By age 11, I had so much scar tissue in my ears L>R, from multiple ruptured eardrums, that I had a mild hearing loss. I babysat for a Deaf family with 6 Deaf children. My friend, Judy W. & I babysat as a team. I was fascinated to be able to talk without speaking. I was excited about learning ASL. These kids went to a residential school & they taught me colors, numbers, finger-spelling and everyday conversational signs. We played games like “Monopoly” and we played “school” & “house” etc.

I received ASL books for each holiday and I learned all that I could on my own. I went to college, then it was the only 4-year Sign Language studies/Interpreting program. After my 3rd year, my Aunt (who lived in AZ) called to tell me that she saw a job opening for an “Assistant Teacher” at a Deaf preschool. The requirements stated that a “college degree was required”. But I’d tested out of my first two college ASL classes & I practically lived in the dorm with 16 Deaf friends. We did everything together and I was just accepted lovingly by them. I’d been already Interpreting for the college classes at my own College, & I was doing Deaf/Blind medical Interpreting. So I flew 2,000 miles and applied for the job. I was so very excited to get the job, over others who had their degrees already. I worked at the Deaf school and I found a wonderful church youth group where I was involved in Interpreting for weekly church services. I also got involved in a an ASL drama (with choreography) group, called “Silent Impressions Productions”. We put on beautiful productions of ASL /choreographed songs & dances with gorgeous costumes. People paid $10 each, to come to our production at ASU. I was in “Nights on Broadway”, “One”(from Chorus Line) & “Hello Dolly”! It was such great fun! I was also in an ASL & Interpretive dance Christian group, called “Silent Praise”!

I had the best 2 years of my younger life ! It was such fun! I did miss home & my friends. I also needed & wanted to go back & finish my degree!

I came back home & finished college. Afterwards I was so excited to land a job as a school district Interpreter by day and as a University, “night classes” Interpreter, at my Alma Mater. I later married and had two children. At that time, with 2 small young children, I just Interpreted the night classes for several years. I continued with the medical Interpreting for Deaf/Blind.

I was in An abusive marriage and after 8 years, I got the courage to get my 2 baby girls & myself out! We went to a domestic violence shelter. I was so proud that My babies & I left on a Saturday early evening; & by Monday afternoon I had a full time job as a professional Interpreter for a school district. I Interpreted for the High school, Middle school & Elementary school.

So to speed things up a bit…. I divorced & re-married 7 or 8 years later. In the meantime I was offered a job with much more money & great medical benefits. I would be a Secretarial “float” (meaning that I had to learn everyone’s jobs so that I could cover for them). I had to learn 500 Drs schedules. I was also assigned to be the research secretary for a well known lung transplant doctor. I wore a pager and was paged multiple times weekly; if not daily, to interpret for Deaf patients who came into the hospital for either an appointment or to the ER.

One night that I particularly remember, I got called from home after I’d already gone home; to interpret for a Deaf patient. He was in the emergency room having a heart attack. I had to be precise in telling the doctors exactly how the patient was feeling. It was then, that I realized Just how very important an Interpreters job really is.

All was going well until the end of Summer in 2002. I was with my husband at a Summer art fair on a lazy Weekend day. During the drive home, we were going through a green light when another person, a man, went through a red light and crashed into our minivan. We were “T-boned”! It was classified as a “catastrophic” accident. My kids were not in the car! I thank God for that always! My husband was not hurt, but he was bruised up a bit.

Unfortunately, I was unconscious and ended up having multiple injuries and many surgeries. All in all, I also acquired several high impact chronic pain illnesses. Some of these include: Systemic RSD/CRPS, Polyneuropathy in Collagen Vascular Disease (aka EDS Type 4/heart & vascular), Degenerative Disc, Disease with multiple herniated & bulging discs at C5,6,7 & L4,5 & S-1 (along with spinal stenosis), Dysautonomia/POTs, Gastroparesis & more, including Cholesteatoma now as well. There’s more but I won’t bore you with all of that! I will add that I suffered a TBI that gave me lowered vision (prisms & convergence insufficiency) & hearing loss (I acquired 2 hearing aids in 2002-3 after the MVA). The TBI was such that I required brain injury rehab for 3 years.

After the Cholesteatoma & Surgery, I now identify as “Deaf/HoH”. The reason for this change (from HoH), is because now I can hear pretty much nothing in my right ear. The left ear is moderate/severe hearing loss. I’ve received two new Signia hearing aids & I’ll be re-tested again in December ’19.

I’ve stayed a strong advocate for Deaf/HoH. I fight oppression, audism & ableism alongside the Deaf community. Please feel free to follow me on Instagram ASLSuzyQ Instagram , Twitter ASLSuzyQ Twitter, Facebook My ASLSuzyQ Facebook Artist/video creator page and my Facebook group ASL Express Facebook group and YouTube My ASLSuzyQ YouTube channel . My ASL group on Facebook is called “ASL Express”. We express ourselves using ASL & with this group, I try to bridge the gap between Hearing, Deaf & Hard of Hearing worlds. I try to expose beginners to Deaf history, Deaf culture & Deaf community. For the more advanced and/or native and/or ASL fluent; we have a comfortable place to share & hang out online!

September is Deaf Awareness Month (short 2 1/2 min video)

ASL Learner Mistakes


Hello Luvs,

Here’s a short video that is about some of the most common mistakes that people who are learning ASL- American Sign Language make. I hope you enjoy!

ASL Learner Mistakes https://youtu.be/CHRkPKa5iRU via @YouTube #asl #americansignlanguage #asllearningmistakes #aslmistakes #deafculture #deafcommunity #hh #hoh

Part of Two Worlds


Hello Luvs,

Many of my “regular” readers may remember that I am “Hard of hearing”. Hearing people usually use the term “hearing impaired”. We prefer to be called “Hard of hearing”. Mostly because we don’t feel that we are broken or “impaired”. Technically it means that Im not totally “medically possible 100% deaf”. I can hear a few various pitches, frequencies and sounds. With my hearing aids in, I can hear a little bit during a “one on one” conversation. But add in background noise and people who mumble or talk very fast; and then it’s nearly impossible. Next, add the situation of trying to “listen” to several people at once, in a crowded room or restaurant? Lastly, there are those with facial hair all around their mouth and lips. They are the group for me, who have the most frustrating lips to read! Then again, it’s not really like “reading”. Because it’s more like piecing together bits and pieces of a puzzle & then trying to “fill in the missing pieces”.

In case you’re not familiar with my hearing loss journey; I’ll recap just a little bit for you. When I was a child, I had recurring ear infections. During those times, I could often be found literally rocking my body back & forth, while curled up in the fetal position. My memories start as young as age 3 years. It was always pure hell while I was living with horrible ear infections. When I complained to my parents about the excruciating 😖 throbbing Pain in my ear (or ears), my mother would always say same thing. She’d tell me “Once your eardrum ruptures, the pressure will go away and you will feel better!” Well, it did feel better after the pressure was gone. But each time that happened it caused scar tissue to form in my ear drums. It also caused mild hearing loss as I was growing up. I remember asking the teachers if I could sit closer to the board to try and hear them better. Therefore my audiologist (in 2002) & ENT Dr. felt that I’ve had mild hearing loss since I was a child. I had tubes put in my ears when I was about 7 or 8 years old. They were surgically placed multiple times and for several years.

Later in 2002, I was a passenger in a car driven by my husband. We were just driving along through a green light when we were hit by a car running through a red light. It was considered a “catastrophic accident”. I acquired a TBI (traumatic brain injury) and had multiple injuries and 9 surgeries. I went to brain injury rehab for 3 years & had 9 years of PT/OT, balance therapy and speech therapy. I acquired a pacemaker, glasses with prisms (for lowered vision), 2 screws in my left shoulder and 2 hearing aids. I also got a wheelchair, a seated wheeled walker, a motorized scooter, loft strand crutches, a cane and several other helping aides for activities of daily living.

I won’t bore you with all of the chronic pain illnesses that came out of that accident. That’s not what this post is all about. But I also acquired a bi-lateral sensory neural hearing loss in both of my ears L>R (but currently (2019), it’s R>L & it’s a mixed hearing loss). Along with the many medical issues, I also acquired lower vision. I saw a Neuro-Othamoligist, who put prisms in my glasses to try and correct some of it. The prisms really bothered me. Today I just have a very strong prescription for eye glasses. Everything has a bit of a halo effect.

It’s ironic and very awesome that prior to that MVA (motor vehicle accident), I had been an ASL Interpreter. I worked at a Deaf preschool and then I interpreted for a school district. In the end, I was a medical Interpreter at a University hospital. I even did volunteer work doing medical interpreting for Deaf/Blind at free medical screening events. I had gone through a 4 year SLS/Interpreting program and finished with a 3.8 gpa.

Back in the 1980’s when I went to college, I practically lived at the dorms with my 16 Deaf friends. We watched CC “General Hospital” daily at 3:00 pm. We even tried to schedule our classes around it! It was a social hour. I’d been learning ASL since age 11 & even “tested out” of the first fingerspelling class.

The Deaf community accepted me and they were kind to me. At that time I went to Deaf bowling every Thursday with DAD club. I had a Deaf boyfriend whose sister was a cheerleader at MSD & we went to all of the football games and even the homecoming dance! Me and my group of college friends, who happened to be Deaf, used to go out dancing on Friday nights. One time my friends & I were on our way to a dance club and we got pulled over for a slight bit of speeding. We were all packed in the back of a mini van signing with each other. One of my friends told me to “talk to the officer”. I was terrified and I told him “No way! I’m afraid! Since I’m with you guys, I don’t want to talk to him either!” We all laughed as the officer just let us go with a handwritten warning on a piece of paper. That was a fun and I felt included.

Just to back track a little, I started learning ASL at age 11. My best friend & I babysat for a Deaf family who lived next door to her. The parents and 6 children were Deaf. The children went to the Lutheran School for Deaf at that time! They included me in many Deaf social activities and I learned the language & received my sign name from them. First we played games and I learned colors, numbers, family signs, days of week and more!

I’ve always felt accepted by the Deaf community. I always respected the language, ASL. How ironic then, that I lost a moderate-severe percentage of my hearing & was already prepared with the tools I needed!

I’ve lost touch with some of my old friends from DAD (Deaf Association of Detroit). But I still have a some close friends from the past, who are Deaf. I still feel a part of the community. I’d like to become even more involved again! But living with several high pain chronic illnesses makes it difficult to get out due to persistent pain.

I’ve found my own ways to reconnect and to feel not so “in-between” two worlds. I get to teach ASL vocabulary with the Deaf Socials on their Instagram and Facebook pages. I love & look forward to each new vocabulary list they give to me for teaching! I truly enjoy doing that and doing song covers to ASL on my Youtube channel: My YouTube channel at: ASLSuzyQ . I also post to my Instagram A link to my ASL Instagram and Twitter A link to my ASL Twitter with the same name. I do this for fun and as a volunteer and advocate for Deaf Awareness.

Lastly, I used to love being a part of two ASL performance groups during the 80’s, when I lived in Arizona & worked at a Deaf preschool. One group was called “Silent Impressions productions”. We performed in choreography and ASL to broadway show tunes and in costumes! We put in shows at ASU and it was so much fun! The other group to which I belonged, was called “Silent Praise”. We performed Christian songs while others did lyrical dances. We did that at the ASU Neumann center. It was such a fun time in my life. My friends and I also interpreted for our church community at St. Theresa’s Catholic Church in Scottsdale, AZ.

After reminiscing in this post, I feel so grateful that I had already been involved with the Deaf community & had many years of experience with ASL, before I became more (*I was mild HoH since elementary school) Hard of Hearing. As ironic as it seems, it’s not all that crazy. I had a mild hearing loss and then it worsened due to the TBI.

I mostly seem to write about chronic pain illnesses. I’ve been writing about the rights of chronic pain patients to have access to much needed opioid pain medications. We need these medications because without them, people like me wouldn’t even be able to do the small amount of activities that we try to do. I was forcibly tapered from my long acting pain meds after doing pretty well on them for almost 14 years! Now I sit in my recliner for approximately16 hours daily. I try to get up, put I make up and do some online activities every few days. But my life is not the same with so much less help for the pain.

Although I still want to continue advocating in that area, I’m doing more & more advocating for Deaf awareness, inclusion and preservation of ASL. I thought I’d put my hearing loss story and ASL history here in my blog too. I’ve written a few posts about Deafness and trying to live in “two worlds”. But I’ve never explained the details of how I became who I am today. I’m a survivor of long time childhood abuse, domestic violence and then a catastrophic car accident. I’m not a “victim” but I am a “fighter and a survivor”! Don’t ever give up!!

I have a Facebook page at: Link to my ASLSUZYQ Facebook page

I have a Facebook group called “ASLExpress” at:Link to join Facebook group ASL Express

Lastly, I have an ASL group for allowing people to post ASL covers in a safe place, called “ASL Song” at: Link to ASL Song Facebook group

“Silent Impressions Productions” & I’m 2nd left
Me Interpreting at church before MVA
Me Interpreting a Song in “Silent Praise@ group

Me working at Deaf preschool
I was in newspaper when I taught elementary kids

My hearing aids