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 Touching Accommodations

If you are a parent, you know the feeling of pride that comes from watching your child(ren) perform in a school play or sing at an event; you’ve experienced the joy that occurs when you visit the classroom or engage in school activities with your child(ren). But, imagine if you had to stay outside the classroom door or couldn’t make it into the auditorium to watch the show. Imagine the feelings of guilt, sadness and separation you’d feel if you couldn’t participate the way every other parent was able to participate. Unfortunately, this happens more than you may think. When a parent uses a wheelchair, or doesn’t have the ability to climb stairs, there’s often no choice but for them to miss out on various aspects and events in their child(ren)’s life. For no other reason than structural inaccessibility, some disabled parents are placed in the awkward position of not being present in their child(ren)’s affairs. I’ve had to hear about my daughter’s classroom activities from other parents and it left me feeling embarrassed, guilt-ridden and upset. I’ve heard other ‘wheelie’ moms express anger, frustration, grief and humiliation at having to miss out on things because they couldn’t gain access into the venue.

When my daughter first started kindergarten at her new school, there were plenty of handicap parking spots available, but none were van accessible. The principal and school security officer both told me to simply make my own spot or take up 2 of the handicap spaces. So, for the first few months of school, that’s what I did. The school is extremely wheelchair accessible once inside – the entire layout of the lower and upper floors flows together via ramps and an elevator is in place. I’m able to go anywhere inside the school I need to go. But there was only one entrance that was level for my power chair to go through and it’s located at the main entrance, which is two schools down from the elementary school (the school itself contains preschool through high school). I would try my best to park near the main entrance whenever I arrived for school activities and then make my way through the high school and middle school to the elementary wing. I was able to attend all her class parties, her performances and the like. It was wonderful, and I had no complaints. I was simply happy to be able to go and be!

During the 3rd month of fall semester, the principal told me they’d put in a van spot for me right by the elementary school! I was excited and felt quite fortunate that the school had made accommodations for me. The only problem was that once I parked, I still had to trek up to the main entrance to get into the school. They had not realized there wasn’t a way into the elementary school for me. I told them it was no big deal (and this was true but on rainy days and as the weather got colder, it wasn’t the most ideal).

 

Right before Christmas break, I arrived one afternoon to pick up my daughter and a couple of faculty members approached me. They asked if I’d seen what the principal had made me. Apparently, the principal had decided not to waste time waiting for approval and necessary funds from the budget – he’d spent that day building me a ramp into the elementary school!! I was moved to tears! It sent me the message that I was just as important as the able-bodied parents; that I was wanted and needed there; that I was respected. They recognized my need to be with my child. My daughter’s school made it possible for me to have the same access as the other parents. But, it was what the Headmaster said to me that really meant a lot: he told me yes, it was done for me, but that it would be there for other parents like me in the future.

So, it seems that while they have given me two huge gifts in the form of making the building more accessible, I in return have given them a gift – the gift of awareness. I’m so thankful for all of this!! Using a wheelchair should never prevent me from being present in my daughter’s life but the reality is that it has. And there will be more times in the future that it will. But, as society becomes more aware of the existence of parents with special needs and is educated about the need for accommodations, disabled parents will gain equal access in places such as schools, gyms, auditoriums, etc. There will be a day when we no longer experience our child(ren)’s lives vicariously but are fully engaged as we are meant to be.

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