Life for people with disabilities is often difficult, and it doesn’t have to be this way. America chooses to keep it this way.
While I cannot speak from personal experience with having a disability, I have been a caregiver to three children with them (one terminal, genetic and rare, and twins with moderate-severe hearing loss and resultant speech delays) so I have lived this in my own way.
I advocate for my children who have disabilities because this world wasn’t made for them.
- This is why the ADA exists – businesses don’t always do the right thing without being told to do so.
- This is why 504 plans exist – schools cannot always easily accommodate disabilities (or choose not to) without guidance and extra funding.
- This is why DEI (diversity, equity, and inclusion) matters – because some businesses/organizations/ states don’t want to include everyone.
Until Tori’s diagnosis of Krabbe disease in 2015, I had no idea how challenging it was to navigate the medical system (especially with a condition few have heard of) and the insurance world.
Until I had twins with hearing loss, I had no idea how difficult it is to obtain access to the very services for which they qualify. Or that insurers can exclude hearing-related coverage.
Until I experienced both of these journeys of motherhood, I had no idea how much it impacts the number of hours I can actually work, despite having a master’s degree and a strong desire to contribute to our family’s finances.
Until I had twins in a state with no universal Pre-K, I had no idea that it’s difficult for most families to afford preschool, including ours.
Until I had children with disabilities,
I had no idea how difficult it would be
to convince decision-makers of their value.
Until I had children with disabilities,
I didn’t realize that their very existence
was a partisan tool, and sometimes a weapon.
Don’t wait until something impacts you personally to care about it. Listen to the stories of those who are struggling and help solve these problems.
Partisanship doesn’t apply here. Loving our neighbors should mean doing whatever we can to make a difficult life easier so they can be just as much a part of their world as we are. Treating them (and their problems) like we would want to be treated if we were in their shoes.
Making the world easy to navigate for everyone is loving our neighbor.
Children are not a political pawn. They are not a line item to be cut from the budget – especially those with medical conditions and disabilities that they – or their parents – didn’t ask for. I’d much rather know that my tax dollars are going to help those who need it than to be paying for tax cuts for the already wealthy.
Your value is in your existence, not the number in your bank account. Healthcare is a human right, and that’s why until we have universal healthcare, Medicaid is essential.
Please ask your representatives to NOT cut Medicaid, especially when they are using it to finance tax cuts for the wealthy.
And I can hear it already: “She’s become a liberal!” Being liberal isn’t bad, by the way, but I’m also not liberal. I’m simply a mother navigating a challenging situation in our country and the solutions have become obvious. And I hope that sharing my story will help someone see it, too.
Even So, Joy 
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