Advocating for better disability inclusion among children

Growing up with PH, I had to invent my own accommodations

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by Anna Jeter |

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I was listening to a sermon via a podcast the other weekend. During the announcements for the week, my ears perked up as the pastor eagerly discussed an exciting event coming up.

It would be a three-day affair. Each day involved walking a portion of the city, stopping at various churches to spend the night, and visiting meaningful landmarks along the way. It was an impressive 21-mile pilgrimage, ending at the confluence of the Minnesota and Mississippi Rivers, a sacred site.

The pastor invited anyone in the congregation to join, and then, with a bit of joking cruelty, mentioned it would be mandatory for the eighth-grade communion class. In a more sincere tone, he assured listeners that it would be an immense bonding experience and a source of pride for the group.

My heart sank. My mind immediately regressed to the state of my eighth-grade self, and the anxiety I would have felt at the mention of an event like this. I went to work imagining how I would have adapted the plan for myself, knowing that this responsibility would have likely been placed on me and my parents.

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Making our own adaptations

I can picture it pretty clearly. My parents probably would have spent the weekend driving me from location to location. Thinking about the state of my health with pulmonary hypertension at the time, I know the overnight stays wouldn’t have been an issue, and I probably could’ve enjoyed the stops along the way, depending on their accessibility. We would have needed to make a plan to coordinate my medications, including my IV infusion, but it would’ve been easily manageable for a short time.

It was the abundance of walking that I know I wouldn’t have been able to participate in. And the attention I would have drawn by adapting the plan to my abilities would’ve certainly been less than ideal at that age. Not to mention how much I would’ve missed out on by not being present for those moments.

I remember many scenarios throughout my life that looked pretty similar to this one. In fact, in eighth grade, the tradition at my school was for the class to celebrate their last day by walking two miles to a regional park for a picnic.

There was no plan for those who couldn’t walk that distance. I ended up riding in the car with a beloved older teacher who also didn’t feel too comfortable walking. I remember her putting her car in neutral at the top of a hill and letting it roll, so we could see how far it’d go. We had time to kill. That was my memory from the day, rather than walking with my friends, whom I met at the other end.

We can’t assume an absence of disability

In hindsight, I’m curious why there was no plan for those of us who couldn’t walk. I attended a large school, and I couldn’t have been the only person who needed one. At the very least, some students were in wheelchairs and others used other mobility aids. Did they attend? Did their parents drive them, as mine would have if no other plan was suggested? Couldn’t a bus have been arranged to bring us all together?

I didn’t question these things growing up. Frankly, there was less advocacy for the inclusion of disabled people at the time. The responsibility always fell to my parents and me to invent accommodations when needed.

I’m so grateful to both of them for each field trip and overnight endeavor they chaperoned so they could be nearby as my caregivers. They did so much to make sure I never felt left out due to my health issues. But looking back, I can’t help but feel that I was failed by the adults who were organizing these events.

In the presence of such dilemmas, I hope the disability community will always advocate to be included as much as possible, rather than abandoning participation altogether (which is certainly, in some ways, the easier option).

With that said, as awareness of people with disabilities, whether visible or invisible, grows, the world needs to begin to change. Ultimately, an absence of disability should never be the assumption. There needs to be as many opportunities as possible for everyone to come to the table.

I would hope this is becoming true, especially for children, and especially in spaces as vulnerable as school and church. In the meantime, making the need for adapted options known is so essential. You never know who may opt in with relief.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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