Time and again, in comments on this blog, on Twitter, by professionals, by people who both know me and don’t, I’m asked why I can’t just work. I’m told, “You’re so smart, you surely can work.” Or, as I’ve written about in the past, “But you have your law degree!” I’m tired of defending myself from these assertions – some perhaps well meaning but most coming with deep judgment and scorn. So I think it’s time to provide some information on disability.
I adopted Elliot on September 23, 2005. The only pet I’d had before him was a fish. But after caring for my friends’ cats, I wanted to adopt one of my own – someone to keep me company. I joked that I’d just started law school and I needed someone to love but I didn’t have time for a boyfriend. Elliot brought so much joy to my life.
Exactly a year later, I adopted Kennedy. I knew Elliot needed a friend for the times I was away – the long days at school and the many hospital visits. Kennedy and Elliot loved each other from the start and their love carried me through some very hard times.
Any pet owner knows how dear their pets are to them. Pets are part of the family.
And if you’re disabled – mentally or physically, you know just how much pets are part of your healthcare. They heal you, they keep you grounded, they are your constant companions willing to love you no matter what.
“And at last you’ll know with surpassing certainty that only one thing is more frightening than speaking your truth. And that is not speaking.” – Audre Lorde
I have survived:
Healthcare does not have a problem with silos.
In fact, there are no silos in healthcare; there are only boundaries.
If we truly want to change healthcare, we need to break boundaries.
A year ago, through the kindness of a friend, I finally got a home. I moved into a one-bedroom apartment with my cats in a quiet neighborhood after a year of homelessness. And in this year, I have been able to heal and find myself again.
We talk about social determinants of health, but I think few people really understand how impactful they truly are, particularly housing.
I find it ironic that before I became disabled, one of my last jobs was teaching social workers and doing outreach to the public about Medicare Savings Programs (MSPs) and now I rely on them. If the government hadn’t funded a grant for me to do this outreach, I might never have known this program exists. Problem is, most doctors, hospitals, politicians, and even the Medicaid offices that administer them don’t understand them at all which limits my access to care at times. Not to mention, most don’t know that their low-income Medicare patients could qualify for them.
The Medicare Savings Programs are a great resource for those who are poor and need medical assistance. The problem is, they shouldn’t be administered by the states through the state eligibility offices with Medicaid. This current set up confuses providers, creates huge burdens on patients, and adds stress to an already broken system with subpar tools and resources. But because it is administered along with Medicaid, as if it’s Medicaid, I’m subjected to this system, one that already already makes me feel like a burden, one that takes away my dignity as I try to simply get by. And unfortunately, it’s never going to get better.
This week, the current president released his budget plan which included deep cuts in many of the programs that make our country great and that keep people alive. Programs from meals on wheels to the Environmental Protection Agency to the National Institutes for Health among many others are threatened under this budget proposal in a way and to an extent they haven’t been before. In some ways this move is not surprising to me as it continues a deep narrative about a person’s value and worth, particularly when they have very little – or rather a person’s lack of worth. A narrative that blames and shames individuals based on stigmatizing assumptions about who people are – particularly the assumption that when someone has little, when they are poor it is a character flaw, they are merely lazy or uneducated.