Accepting my New Disability – HoH

A few weeks ago, I went to an audiology appointment I’d been avoiding for over a year. Internally, I knew I could no longer hear as well as those around me. But my fear of learning this from a doctor kept me from facing the truth. Sure enough, I was told I have sensorineural hearing loss; hearing loss so severe, it’s usually seen only in those in their late 60’s (I just turned 39); and my hearing loss will worsen as times ticks on, necessitating repeated visits to an audiologist – yet another specialist to work into my already overloaded medical schedule! The good news, or so I was informed that day by the doctor, is that I need hearing aids which will allow me to hear typically once again.

But I did not see any of this as good news. It devastated me. I began to cry thinking about having to deal with another regression of my body. I sobbed realizing I will need one more medical device just to have a ‘normal’ day. Tears fell as I contemplated yet another thing that was “wrong” with my body; how “broken” I am; how tired I am with all the diagnoses, medical equipment, modifications, etc. Quite simply, I suddenly missed my old life – before age 28 when my body worked like nearly everyone else’s; where simple, daily tasks weren’t challenging; where intense planning didn’t go into having a simple dinner out with friends or going to school. I was glued to a pity pot and couldn’t seem to stand up and flush!

Two things happened that precipitated my turn around in attitude. The first was a comment the doctor made on my way out. As I wiped away the last of my tears and struggled to get my brave face on for those in the waiting room, he said, “You know, hearing aids are just like your glasses or your powerchair. You don’t realize you need them and may not even want them, but they’ll be life-changing and life-enhancing.” This statement planted a seed for me to ponder later.

Dis acceptance pic    The other thing to occur that helped me change my perspective was a post from a friend in the disability community. It was about accepting our disabilities and all that we gain from doing so. It finally clicked in me that everything was fine. I’m not “broken;” nothing’s “wrong” with me; I’m wonderful the way I am with my splints, powerchair, Service Dog and soon, my hearing aids. I recalled how I felt at the appointment when I was age 35 – I’d gone in to discuss a prescription for a new manual wheelchair, but my doctor had decided I needed to be realistic and get measured for a powerchair instead. I remember feeling devastated. I worried that I’d look like an elderly person in a powerchair (you know, because that’s the worst possible thing! Ha-ha!). I didn’t want the powerchair but when I finally got it delivered and rolled around in it, my eyes were open to how freeing it was. It’s given me more independence and the ability to better keep up with my young child. I’ve accepted that I need my chair to live in the best way possible and to obtain movement through the world in which I travel daily as an active member of my community. And, speaking of community, I’ll have a new community within the disability community to go to for support, encouragement, ideas, and more and perhaps someday I’ll be able to help another HoH (Hard of Hearing) person.

I messaged my friend, Lindsey, thanking her for her post and telling her about my appointment. It’s something I’ve still not shared publicly even though the shame and devastation are gone. Lindsey’s always encouraged me, supported me and quite frankly, as a fellow wheelchair user, she inspires me. She was Ms. Wheelchair Tennessee 2018 and I enjoyed following her journey. She runs a website and vlog on YouTube which I urge you to check out.

Being HoH isn’t the worst thing that can happen to me. I’ve certainly dealt with worse already. I accept my need for hearing aids and am looking forward to finding out what I’ve been missing all this time. Like my powerchair and Service Dog, hearing aids will open doors for me in the areas of independence, dignity, freedom and give me the ability to hear that my disability has robbed me of.

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Blessing Blooms From ‘Bathroom Blunder’

            I recently wrote about an incident which occurred at my daughter’s school titled, “School’s Inaccessibility Causes Bathroom Blunder.” In the two years my daughter has attended the school, it was the first time I found myself in a physically inaccessible situation. I was quite dismayed, to say the least. After the experience, I planned to contact the Headmaster and ask for a meeting. I intended to let him know how I’d felt and that I expected the necessary accommodations to be made to the bathroom by the end of the school year.

            So, it was to my surprise (and delight) that I received an email from the Headmaster a week later. He acknowledged that I must have felt frustrated and embarrassed, apologized profusely and explained to me that the Director of Facilities had bought equipment and installed it in order to make the bathroom ADA compliant and fully accessible to people who use wheelchairs. He invited me to come look at the bathroom and let him know if it did indeed meet requirements necessary for someone to transfer over to the commode.

            I stopped by the school earlier this week and was pleased that the stall divider between the accessible stall and the one beside it had been taken out and replaced with a thicker, sturdier divider. A horizontal transfer bar ran from behind the toilet to the side. (**Please see photos at bottom of article**) I went to the main office and the Headmaster came out to apologize again to me, this time in person. He commented that any time I see something that isn’t accessible or needs improvement, to please contact him so it can be dealt with immediately. I told him the only change in the bathroom I’d like to see at this point is a vertical bar above the horizontal one. For me, my upper body is regressing and I’m also a heavier person, so I grab onto both bars to transfer – it’s simply safer for me.

            It’s important to me that people know how the school dealt with this situation. I didn’t have to say anything to them. The school took the initiative. They responded quickly and reached out to me, not only apologizing for my experience but inviting me to make sure they’d fixed the problem. This solidified my faith in this school. In a world where so often, the disability community must fight for rights, accommodations, etc., it’s nice and reassuring that there’s people and places that will act quickly and with compassion simply because it’s the right thing to do.  

 

 

 

 

 

School’s Inaccessibility Causes Bathroom Blunder

            It was meant to be a very special day at my daughter’s school. And, for the most part, it was. Her school recently had a day where the students were encouraged to invite friends and family members to watch a short concert and enjoy a reception afterwards. To my knowledge, I’m the only parent/caregiver in a power chair. I’ve always been impressed with the school’s accessibility. The floorplans are laid out where everything flows and if there’s a dip in levels, ramps are in place. There is also an elevator connecting the two floors. Until the day of the concert, I’d assumed the school was completely wheelchair accessible.

            I’m on a medication that acts as an extremely heavy diuretic in order to flush my body of its spinal fluid (my body no longer absorbs its spinal fluid so the danger is its ability to build up in/around the brain and spinal column). During the first song the children sang, I started feeling as though I needed to go to the bathroom. But didn’t want to make a scene leaving as I was sitting in front of the bleachers and would also have to get my Service Dog up and out with me. So, I sat there thinking I’d just make a quick getaway when I could. But each song led into another until I was hurting, I had to pee so bad! Finally, the principal dismissed the students and families and we all bled out into the hallway. I quickly went to a bathroom but upon opening the outer door, I realized I couldn’t even get my chair through. So, I backed into the hallway and headed towards another bathroom. This time, my chair got in, but there were no stalls big enough for me to use (not only needing to fit my power chair but also my Service Dog). I left that bathroom and saw some kids in the hallway. I asked them where there was a handicap bathroom and they pointed me in another direction. I got so excited until I realized the stall was long but not wide, meaning I’d drive up right in front of the toilet and need to spin around to use the bathroom – impossible.

            I grew increasingly uneasy, not just physically but mentally and emotionally. How hard was it to find an accessible bathroom? Why was this simple need so difficult to fulfill? I knew of one more bathroom I could try so quickly made my way there. And, there it was! A stall big enough for me and my Dog!! I pulled up beside the commode and shut the chair off, relieved to finally be able to use the bathroom! And then I reached for the transfer bar… that wasn’t there. My heart sunk; my face fell. I turned my chair back on and left the bathroom, tears forming in my eyes. In the 15-20 minutes I’d been searching for a place to pee, the other women who’d been lined up at different bathrooms were no longer there, having been able to easily satisfy a basic human function. I felt alone and inadequate, separate and different.

            I went to the main office and as I began explaining my dilemma to the secretary, I started sobbing. My pelvic area hurt; my pride hurt; my dignity was aching as well. She didn’t know what to do so she called the school nurse. The nurse came to the front office and tried to calm me down. I was told that she could help me use the bathroom but that was not the solution I was looking for. She told me she did this all the time when she worked in hospitals; I responded that I wasn’t in a hospital; I’m an adult mother who uses the restroom by myself and this was unacceptable to me. But there obviously was no other way for me to relieve myself so I went with the nurse down the hallway, passing students and their guests, towards the bathroom. I felt humiliated. It seemed like it was glaringly apparent to everyone who saw us enter that I’m incapable of using the bathroom unaided. That couldn’t be farther from the truth. It wasn’t that I had limitations in this area; the school did. But I wasn’t going to stop each person I passed to explain the situation; I simply swallowed my pride, my dignity, my capable self and let the nurse come into the bathroom with me.

            What ultimately had to happen for me to go the bathroom was the nurse not only helping me stand but her pulling down my pants and underwear while I held onto the top of the stall. She then had to pull my underwear and pants back up for me and help me back into the chair. To say I was mortified is putting it lightly. This should not have happened. There should have been transfer bars in the stall to allow me the dignity to use the bathroom privately just as every other student and adult did that day. My daughter and I are already different enough, and I was heartbroken that students had seen their nurse go into the bathroom with me – I didn’t want my having to pee end with negative consequences for my little girl. Kids can be cruel. Furthermore, the kids see their parents and adult friends in roles of authority, control and an all-around sense of what being a grown-up means. I want them to see me that way, too. Because it’s true – I am in a position of authority. And while we as adults don’t truly have control, it’s a natural assumption of a child to think that we do.

            Once I finished using the restroom, I had missed nearly the entire reception. I found my daughter and sat with her for about five minutes while she finished eating. She wanted to know where I had been and why I hadn’t joined her until that moment. I told her I had to use the restroom and she exclaimed how long it had taken me. I didn’t have the heart to tell her the nurse had to help me; she probably would have been confused as to why. She knows I can go to the bathroom by myself.

            I plan on meeting with the Dean of students. I intend to discuss this event with him and suggest necessary changes. I want this to be a moment of education for the school. This was not something that happened because I’m disabled. This happened because the school does not have the adequate and acceptable structures in place for someone like me. I may be their first disabled parent but I’m pretty sure I wont be their last. And I don’t want another parent to feel like I felt emotionally, mentally and physically that day. I don’t want them to miss out on an activity with their child because the school is not equipped for them.