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If You Have Healthcare Today, Thank a Disabled Person

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Today I took a breath. I exhaled. I felt calm.

For the first time in a while, I spent a few hours not worrying about whether I will have Medicaid in a year or two or three. I took comfort in knowing I’ll be able to get out of bed, shower and get dressed. I had lunch with a friend who didn’t have to worry about whether her insurance will drop her because she’s a cancer survivor and whether she could get insurance if she or her husband change jobs.

I know this healthcare fight isn’t over. Congress could go back to it anytime and almost certainly will. For the next year, and possibly the next three years, tens of millions of people will be in danger of losing their healthcare and other support services they need to live. We have to hunker down and prepare for a long, drawn-out battle. But in this moment of calm, I think it’s time we take a moment to reflect on how the AHCA/BCRA/alphabet soup was defeated, and give credit where credit is due.

Amidst all the verbal objections, the critical statements from politicians, medical associations and nonprofits, one group had the courage to do more than talk. They put their bodies, their health, even their lives on the line because they understood what is at stake. They are a group of people society doesn’t necessarily hear from or think about often, even though they represent 20 percent of the population. They are my people. They are people with disabilities.

On June 22, 2017, after numerous attempts to get an appointment to discuss their concerns about the healthcare bill, a group of disability rights advocates with ADAPT held a protest in Senator Mitch McConnell’s Washington, D.C. office. Some protesters lay on the ground to stage a “die-in,” while others were dragged from their wheelchairs and in some cases dropped by police. Dozens of people were arrested — and similar scenes later unfolded at the local offices of other senators, notably Cory Gardner in Denver, where protesters sat in for two days before they were forcibly removed.

The news reports from these events shocked the public; the photos and videos were instantly iconic and spread across the internet like wildfire. People aren’t accustomed to seeing wheelchair users, people with severe and visible medical conditions, getting roughed up by the police. (Though it happens to people with mental illness and other “invisible” disabilities all the time with little media attention.) The cruelty and disregard for their bodies mirrored the cruelty and disregard the healthcare bills showed towards the bodies of 26 million-plus citizens. Many people wondered: If this is how politicians treat those society often counts among the most vulnerable, what does it mean for the rest of us?

Like generations of civil rights activists before them, people with disabilities sat down and lay down to stand up for our most fundamental rights to life, liberty and the pursuit of happiness. Each of them represented thousands of other people with disabilities who could not be there due to distance, health or financial considerations. But we were not silent, either. People shared their ACA and Medicaid stories and opened up about deeply personal health challenges. They took photos and made videos explaining how the healthcare bill would wreck their lives. I filmed mine in the bathroom because my right to pee is at stake. Everyone’s rights and freedoms are at stake.

The protests worked. People who didn’t consider themselves to be among the ranks of the disabled started to realize their diabetes or depression or disc disease meant repealing the ACA and cutting Medicaid would hurt them, too. And they took action. They called and emailed their senators. They joined disability rights advocates in blogging and Facebooking and Tweeting. They shared their stories of being able to see a doctor and afford their medication because of the ACA or Medicaid. And all the terrible variants of the bill got voted down. Let’s make sure they stay that way.

To keep fighting, we have to understand what we’re fighting for. Coverage for preexisting conditions and preventative screenings are some of the ACA protections just about everyone needs or will need. But for people with significant disabilities, Medicaid does so much more. It funds home and community-based services, most notably in-home care attendants to help people with disabilities with tasks ranging from housekeeping to dressing, bathing, and complex activities like changing catheters and maintaining ventilators. People with disabilities can choose who they hire, and fire bad employees.

In-home care preserves the right of people with disabilities to live in their own homes, and empowers them to enjoy fundamental rights many people take for granted. Without Medicaid and the Working Disabled buy-in program in the state where I live, I wouldn’t be able to work at The Mighty and write this article because I could never afford to pay the wages of my care attendants on top of housing, food, and bills. Thanks to Medicaid I can work, write, travel, visit friends and hug my dogs. Medicaid means life and liberty if you have a disability.

Medicaid is far from perfect. If the general public knew how limited and poorly managed many of these Medicaid home care programs are, they’d be horrified at how little the government does to help people with disabilities. Home care workers get paid so poorly ($9.35 per hour in my state; it’s similarly low in many places) that it’s difficult to find responsible, skilled employees without supplementing the wage, which many people can’t afford to do. Turnover is high, and theft and abuse are common. Not all states have enough funding allocated for home care; half a million disabled people can’t even get services at all because they’re stuck on waiting lists.

And yet disability activists are getting arrested and thrown in jail to save Medicaid home care. Why? Because the alternative is even worse: wasting away in a nursing home that reeks of urine, your physical needs poorly met by people who often don’t care about you, with no freedom to work, go to school, visit friends, or fall in love. Politicians who viewed the disability community as vulnerable underestimated how strong we can be when our lives are on the line.

We need to fix these programs that can and should help millions of people. It’s time to move from reacting to a threat to acting on behalf of our freedom. People from both sides of the political aisle should be coming together to support and improve Medicaid home and community-based services, as they have bipartisan appeal. In-home care can reduce federal and state spending because it costs less than nursing homes. Medicaid buy-in programs enable many people with disabilities to hold jobs and participate in the economy through homeownership or renting, shopping, travel and more. Yet the Disability Integration Act, which would guarantee the right to home and community-based services and also require private insurance to pay for this type of care, languishes while terrible healthcare bills go up for a vote.

Today, at least 26 million citizens have healthcare because people with disabilities put their bodies on the line to save it. If you appreciate their sacrifices, please call your representative and senator and ask them to cosponsor the Disability Integration Act. If you’re one of those people who would’ve lost insurance or your premiums would have become unaffordable while the rich got a tax cut, please take a moment and think about who saved your ass. Yes, Democrats stood united against the bill and a few brave Republicans did the right thing. But it was the people lying down in those senators’ offices who turned the tide. So if you have healthcare today, thank a disabled person.

Mighty contributors explain what the ACA and Medicaid mean for them:

How Medicaid Cuts Would Hurt Me as a Person With a Disability

How Medicaid Cuts Would Decimate Services for People With Intellectual Disabilities

To the Republicans Voting on My Health Care, From an Employed Person With a Disability

How Repealing the ACA Would Hurt My Family With Pre-Existing Conditions

Follow this journey on Free Wheelin’.

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Lead photo of Stephanie Woodward by Colleen Flanagan.

Originally published: July 31, 2017
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