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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A Party Invitation Also Invites a Change in Perspective

Typically, when my daughter receives an invitation to a party, I’m excited. I’m thrilled for her and look forward to having fun together while celebrating a special occasion, usually a birthday. Yet a birthday invitation came for a slightly older friend who was having her party at the skating rink. Now, there are several physical activities I miss doing since becoming disabled – water skiing, hiking and roller skating being a few. And there are times I feel guilty about my lack of ability to instruct my daughter in not only these but other activities (hula-hooping, jumping rope, etc.). Before receiving the skating party invite, I would’ve told you that I would love to take my daughter to the roller rink but I quickly found this to be untruthful when faced with a reason to do so.

Seeing the invitation, the words “Roller Skating Rink” kept jumping out at me as if mocking me for the inability to participate, to show my daughter how to skate, to enjoy this activity with her. At least, that was MY initial perception. I knew that I could get on the rink with her in my power chair if the building had a portable ramp but was wrapped up in anxiety over being stared at and put on display. I worried about my little girl not enjoying herself because of people staring, pointing, etc. I didn’t want to go and be the object of discussion; I just wanted to party at the rink with my kid.

I was explaining all of my worries and stress to a dear friend who listened patiently before saying, “You know, Lylly. If anyone does stare, perhaps it’ll be kids who’ll look at your daughter with longing, wishing their parents were on the rink with them. Or if adults stare, maybe it’ll be because you’re out there with your daughter instead of sitting on the sidelines observing.” BAM! I hadn’t considered THAT at all!

The day of the party, after acquiring skates for my daughter, I asked to speak to the manager and he put out the portable ramp. She held on to the back of my power chair and we went around slowly so she could adjust to the feel of being on skates. Her little friend, the birthday girl herself(!), wanted to hang on as well and so the three of us went around and around. We had such a great time!! I forgot all about the other people in the rink and was delighted to be out there with my little one and her friend! The few times I looked at anyone, they were either smiling as we passed them or obviously into their conversations and not paying us a bit of attention.

When I got the invitation, I allowed myself to forget that this life is our normal. Being stared at is normal at times to the point that we don’t often even notice it (and I tend to notice it more than my 5-year-old anyway!). I almost worried myself silly and if my friend hadn’t helped me gain a new perspective, I would’ve shown up at the party feeling stressed instead of ready to take on the rink! It doesn’t matter HOW I spend time with my daughter – it matters THAT I spend time with her! And we usually have a blast!! Just as we did at the skating rink! In fact, it’s on our summer to-do list as a place to return and enjoy one another’s company!

 

What My Father Taught Me About Invisible Illness & Making Assumptions Within the Disabled Community

An entire month has gone by since my last post. I will not apologize for that – On December 4th, my dad passed away suddenly after a moderately short battle with a chronic illness. The week of Thanksgiving, my family was told he was in complete organ failure; his body was filling with fluids released by his liver; his hernias had shifted & fluid was going into his lungs – we knew he was not going to be with us for more than a year, but were not prepared when he fell, causing his body to shut down. He died quickly, and I’m thankful he did not have to suffer more than he already was.

In reflecting on my dad’s illness and the effects it had on his body, I realized I’d made quite a few mistakes during his last year – especially within the months leading up to his death. When people see me park in handicap parking, it is obvious when I get out of my van that I’m honestly, legitimately and legally permitted to park there. When I use designated stalls in restrooms, no one questions my necessity for those accommodations. My illness and my disability are not invisible. Rather, they are glaring and direct.

My dad, however, did not use adaptive mobility equipment until one month prior to him passing. At the end, he had trouble walking and required the use of a rollator. Before that, when he’d park in a designated spot, here is what people saw: An obese man with no clear physical limitation walking into an establishment. There were times, early on, that I (embarrassingly enough) bristled when I saw him park in handicap parking. Before knowing what was wrong with my dad, I thought he used obesity as the criterion to gain certain accommodations – I hate that I thought these things and am loath to admit them, but am sharing in hopes that someone who reads this will better understand my overall point.

My dad was actually not obese. He had several large abdominal hernias and as I’ve previously stated, his body was filling with fluid. If a person were to look at his face, arms, legs and neck, it would be obvious that he was in fact thin. The “weight” he carried was solely in his torso. Furthermore, to a stranger it may have seemed that he walked just fine. But, to those of us around him, we’d watch in horror and helplessness as each step caused his breathing to become more and more labored (recall the fluid build-up in his lungs).

There are times that people make assumptions about what it means to “look sick.” Assumptions are also made about what qualifies as a “disability.” I’ve heard people grumble about “that heavy-set woman using the handicap stall” or “the fat man who just needs to lose weight so he wont be disabled.” It’s not that those exact thoughts have come into my head, but I’ve already admitted that I myself, as a member of the disabled community (and one who doesn’t need to carry a membership card since I’m rolling along through life) have also wondered why a seemingly healthy and able-bodied individual is using a space or stall or other modification meant for ‘us.’ This is plain prejudice (yes, I admit that!). It’s stereotyping, generalizing, assuming and jumping to conclusions about things I have no right to nor expertise in!!

Whether you are chronically ill, disabled or healthy and able-bodied, I ask that we all cease to pass judgments on people who use services for the disabled community. There’s usually a lot more to the person’s story than their body is able to convey to our untrained eyes.

 

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In Loving Memory of my dad, Rob Sasser, who taught me a lot, even when he didn’t know it. May 12, 1952-December 4, 2016