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Tuesday, September 22, 2020

As a Disabled Woman and a Healthcare Consumer, I Beg You to Vote

 Today, September 22, 2020 is National Voter Registration Day. The upcoming election on November 3, 2020 is really important for many reasons, especially for me as a disabled voter. It can be tempting to feel like there is no purpose in voting or like it is impossible to change “the system.” But now is not the time for hopelessness—you matter, as does your right to vote, an opportunity for which our ancestors were willing to give their lives. 


As I cast my ballot this fall, healthcare will be at the forefront of my mind. 


This election will affect the future of the Affordable Care Act (ACA), which expanded access to home and community- based services for people with disabilities like me through a provision called the Community First Choice Option (CFCO). CFCO is a dense piece of policy but in summary, it makes it easier for states to offer assistance with activities of daily living (ADLs) like bathing, dressing, and eating by prohibiting wait lists and requiring that eligibility criteria be the same for all diagnosis groups. The federal government gives more money to CFCO compliant states—in turn, these states have increased funding to keep folks like me out of nursing homes. 


The ACA also expands Medicaid in participating states to non-disabled adults, many of whom have impairments, but still don’t meet the requirements to get Medicaid through government benefits like SSI. The Medicaid expansion also helps non-disabled low-income adults whose jobs don’t provide insurance, those between jobs, and non-disabled adults who may not have access to employer coverage for other reasons (think people who stay home to care for a medically complex family member).


Finally, if you have been able to stay on parental insurance through age 26, you can thank the ACA. The fate of these policies could be on the line very soon—this is just one reason I vote!


Anyone who has read my work knows I am passionate about Medicaid advocacy. It doesn’t make me a lot of friends at parties (shocking, I know!), but my constant babble about Medicaid is warranted. For people with disabilities who need personal care assistance (hi! It’s me!) and for the increasing number of elders in need, Medicaid is a lifeline. Medicaid is the payer for long-term care expenses, which out of pocket would cost more than the average annual salary. 


Three years ago, when I appeared in a video about Medicaid, internet trolls literally told me I deserved to die if I couldn’t pay for an aide. Others said if they were in a wheelchair, they would take a lethal injection and that knowing the expense of my disability, my parents should have aborted me. The truth that people think this way shook me to my core. But I would appear in the video again and bear the wounds inflicted by those comments again—because Medicaid matters that much to me and because this fight is bigger than my personal needs.


In addition to long term care, did you know that Medicaid provides funding for some special education services?  


Among Medicaid eligible students, Medicaid provides funding for support services such as occupational therapy, physical therapy, speech therapy, counseling, and nursing. Some districts use this funding to provide school nurses, which outrageously are not required! In total, Medicaid allocates about 4 billion dollars for special education services. 


Clearly, there are dozens of issues in this election, but healthcare hits the closest to home for me. My point is that this election is about more than just a president. When you vote, you make choices about the future of a myriad of programs that affect real lives. And when you don’t vote, I hear that you don’t care. That really hurts.


To find more information about voting in your state, including mail-in ballots due to COVID-19, check out this helpful guide: Rock the Vote! Voter Guide


The polling place doesn’t have an accessible voting machine!


The accessible door is locked!


The poll worker is trying to pressure you not to use the accessible machine!


The poll worker condescendingly suggests that your mom just push the buttons for you!


If you’re having an accessibility issue, what should you do?


Know your rights: - item-212487


Contact your local board of elections as soon as possible to report the problem:


Some states offer early voting, which is especially helpful to disabled voters who rely on services like paratransit. You can find out here if you can vote early:


There is so much at stake on November 3! If not for yourself, participate for me and for millions of Americans for whom these issues are not abstract. 


Naming America’s injustices and demanding positive change does not mean you hate your country. It means you love her so much that you call on her to grow and you believe in her potential to become better. Most importantly, it means you love her enough to help her do so.



**For old times sake, here's 2017 me talking about Medicaid. Come at me, trolls... I'm stronger than you.**

Kathleen Downes- Medicaid interview for Mic

Thursday, July 9, 2020

What I'm Thinking About This Disability Pride Month

During this Disability Pride Month, I have spent many quiet hours thinking about what disability pride means to me. I wish I had a perfectly neat, simple, eloquent answer, but I don’t… because I don’t think disability is a neat, simple experience.

I used to feel pressured to hide the painful parts of my disabled existence, for fear that the non-disabled world would only see those painful experiences and assume that being disabled was full-stop miserable. But I’ve learned to acknowledge those painful, messy parts of my living in this body, because they are real and we as a community do ourselves a great disservice when we push away our pain. 

So, here goes. I am 27 years old and my body hurts every single day without exception. Cerebral palsy is literally in my bones. I imagine there’s some wacky calculation, like dog years (OK, I’m kidding!) to figure out the true age of my hips, which seem like they moved to the retirement community for chronically achy joints long ago. I carry both the physical scars of multiple surgeries and the invisible scars ground into the deepest parts of me by ableism.

I can still see seventh grade me, the little girl in the red wheelchair who hid in the elevator before school rather than get stepped around, stepped over, or awkwardly placed at the only accessible lunch table that was otherwise used for detention.

I can see the nurse’s aide, who when asked to help me to an inaccessible hospital bathroom replied that “this floor is for people who walk.”

I can see my middle school self, refusing to drink anything in the hopes that I could get home without peeing. My refusal was mostly about avoiding an abusive caregiver, but also about the fact that finding an accessible bathroom that fit a real powerchair, not an imaginary stick wheelchair, was basically impossible.

I can see that high school girl who felt invisible when she wasn’t invited to hang out with a non-disabled schoolmate after sixth grade until college.

And with me always is the reality of our collective disabled grief. Too many of my disabled friends, comrades, and community members have died, and while they leave behind incredible legacies, the brutal hurt of losing them from medical complications, from disease progression, or from the failure of care systems never ever fades. 

Nor does the hurt of wrestling with the strange contradiction that sometimes the same disability that bonded us, that helped create a wildly beautiful human being also snatched that person from me too soon.

All I know is that when non-disabled society marks their deaths by imagining them springing up from their wheelchairs and walking in the afterlife, I want to scream that they were perfect as they were. 

There’s the constant fear that the long-term care system will fail me, that the patchwork “system” society has cobbled together to support us will no longer be enough and I will be taken from my community to an institution where I cannot make my own choices. 

There’s the guilt in knowing that the above scenario is already the truth for too many people just like me.

So, where’s the pride in this? Being disabled sounds pretty hard. Well, it is. But we don’t talk enough about joy. The joy that’s specific to being disabled, the joy I wouldn’t know had I been given another reality. 

To my disability, here are some of the things I love about you.

I love the community you gave me, the way I can spot a fellow wheelchair user and connect us in seconds, usually with fewer than six degrees of separation. My mom and I have a tongue-in-cheek (but only kind of!) routine where we see another wheelie in which we say, “OK, do we know them? Camp, PT, or doctor’s office…we must!” It’s a stereotype that we all know each other, but the secret’s out, we kind of do!

I love the way you’ve taught me to embrace interdependence. You helped me realize early on that independence is the biggest lie ever told. We all need each other in some way and when the rest of the world can understand that, we will heal some of society’s most broken parts.

I love the way you’ve taught me to call bullshit when a well-meaning person declares that they “don’t see me as disabled.” Because anyone who doesn’t see me as disabled flat out doesn’t see me. 

I love that you’ve given me the privilege of laughing with “crip siblings” who lovingly accept my CP squeals and occasional accidental kicks when I’m very excited…the same people who make my tighter hand fly around wildly when I have a burst of emotion.

I love the way you’ve helped me to know God. No, not in the corny “disabled children are special angels of Jesus just for existing” way. The God you’ve revealed to me is a hodge- podge God, too big to fit neatly into a strict set of religious rules. A loving God who already calls this disabled body glorified. A God who builds ramps to Heaven.

I hope that when people think of me they will call to mind my disabled joy and not just my struggles.

I accepted long ago that some people will always think less of me because I am disabled.

 But I do not have to think less of myself. 

I am human and I do not love myself perfectly in every moment of the day. But still, the love is there, thriving inside of me in a society determined to make me hate myself. 

That is what I’m proud of today, this month, and every day I am alive That the joy of being disabled exists in me, alongside and wrapped together with the painful parts of living in a body deemed disposable.

That joy is mine and no one can have it.

Wednesday, March 18, 2020

In This Time of Quarantine, We Are Finding New Ways to End Social Isolation. When We Beat COVID-19, The Fight to End Social Isolation Must Continue

In these #Quarantimes, since the outbreak of COVID-19, I have been thinking a lot about the harms of social isolation. Since long before the outbreak, the consequences of isolation have been well-documented. Social isolation has been linked to health problems from depression to heart disease[1]. About 20% of U.S. adults report feeling isolated on a regular basis[2]. One of the Grand Challenges of Social Work is to eradicate social isolation

The quarantine represents an especially intense version of isolation and we cannot downplay that fact, but some degree of separation from society is sadly, business as usual for too many people. For disabled folks and others living on the margins of society, social isolation is an ever-present reality. In other words, feeling left out and left behind, for us, is nothing new. A report by the organization Scope found 85% of disabled adults report feeling lonely[3]

As a person with cerebral palsy, I can certainly relate. 

Rigid care schedules make spontaneous meetups nearly impossible. Public transit is still off-limits for many wheelchair users faced with access barriers as well as for those with spatial and processing impairments that make trains and buses disorienting. For people who can’t go out without assistance, opportunities to leave the home may be restricted to the few hours of care covered by Medicaid. By the time routine tasks are completed, there may be no time in the shift left to go anywhere. Too many disabled people can’t find affordable, accessible housing and are literally trapped in inaccessible homes. The income restrictions placed on disabled recipients of benefit payments and Medicaid leave little extra cash for any “fun” social outings. We are old pros at self-entertaining and our non-disabled peers ought to take note.

I am well-aware of my privilege within the disabled community. As a white, cisgender, straight woman with a stay-at-home parent who has devoted herself to making sure I’m part of the community, I am very fortunate. My father earns enough money to give us a comfortable life. I live in a safe, accessible house. I have an accessible van that I can use if someone drives it. 

And still, social isolation weighs heavily on my spirit.

Beginning in junior high, as my peers became able to go out without assistance, I got left behind. I don’t believe there was any malice, but rather a sense of being inconvenienced, as other kids (and other adults, for the matter) had little interest in seeking accessible spaces to hang out or in navigating my care needs. Most of my high school and junior high friends were others with disabilities who attended different schools, and the peak of socialization for me was my coveted session at summer camp and Friday night phone calls with friends in other schools about whose bus had the most notable screw up. 

I was “lucky” that very few people outwardly bullied me in those days, but there was something nearly as horrible about feeling like I wasn’t even there. Often, remote socialization tools, like the phone and the now memorialized AIM chatroom, sustained me and reminded me who I am on days when I felt invisible.

Now, at age 27, I still consider isolation to be the most difficult part of my disability. Too many people still can’t be bothered to get to know me. Grown adults, even those in social justice circles, frequently don’t seek accessible spaces or don’t invite me rather than make accommodations for my care needs. 

I don’t expect everyone to create perfect disability access on the first shot, but I wish more folks would make a real effort. I can count on one hand the number of others’ homes I am able to visit because most homes are not built to be accessible and the government offers no financial support or incentives to make them so. 

Paratransit is a notoriously good way to miss an event, mass transit in my area is largely inaccessible, and traveling is not logistically or financially possible at times because I must travel with a personal care assistant. I was very fortunate to live away at my university through a unique support program, but even there, the societal barriers that lend themselves to isolation were numerous. 

Since I’ve moved back home, four surgeries in an 18- month period have caused me to joke to friends that I’m becoming a houseplant, climbing towards the light and occasionally sipping water. When it’s tough to get out and the world keeps moving around you, it’s amazing how quickly the texts dwindle, the calls stop, and you start to feel like a vague afterthought to some people. That said, the people who continually check in, send silly GIFs, and make a point to include me in their day mean more to me than they can possibly fathom. 

As a disabled person, “virtual” connection is a lifeline. Facetime, snail mail, social media, and texting are the meat of my ability to be with others. This is especially true given that many of my friends are scattered around the state and the country, a large percentage of them also struggling to get out because of care schedules, finances, or failing health. Other than the glaringly obvious fact that everything is closed and we are all worried about the virus, my interactions with my friends are largely the same amid the pandemic.

The difference? 

Right now, people in mainstream society are collectively, actively looking for ways to break isolation. 

Facetime, texting, Snapchat filters that make me snort, and phone calls are suddenly the stars of everyone’s show. If anything positive is coming of this, it is that society is finally embracing more than one definition of togetherness… and making joyful, wonderful, much needed outlets for people who can’t leave their homes. I’m wondering what those who called my insistence on a virtual conference option in grad school “distracting” and “a lower quality form of engagement” are thinking now. 

Do they realize that their dismissal of virtual interaction was rooted in ableism, classism, and privilege?

Think of the distance forms of connection made mainstream, made precious, in a matter of days.

I have seen virtual concerts.

Classes are popping up to learn a new skill online.

Broadway shows are being streamed.

People are checking in “just because.”

Cheesy and beautiful mass sing -a-longs are happening.

We are finding new, inclusive ways to say “I love you” to our fellow human beings.

And I, a person who is regularly stuck in the house, can see quite plainly how many social and entertainment options are available to those facing isolation when each and every one of us makes a genuine effort to create them. 

I have ways to hang out with people that I have begged and prayed for on my loneliest days.

Why did it take a pandemic?

The point of this discussion is not to ask for your pity or set up an Olympics of who has it the worst. Nor is it to judge anyone who has overlooked people isolated on a regular basis.

Instead, it is to beg you to keep the innovation coming. When the pandemic ends, when we come out glorious survivors who have lived and loved in new ways, don’t stop fighting to bring people together.

Make virtual hangouts a regular option. Call on corporations to improve delivery services. Keep those online concerts, classes, and Facetime visits coming. Normalize virtual connection and give those tools to those who most need them the most. Check on your people.  In these challenging times, we are coming together in new, meaningful ways to make sure everyone, everywhere knows that they are not alone.

When we beat COVID-19, that doesn’t have to change.

[1] National Institute on Aging (2019). Social isolation, loneliness in older people pose health risks. Retrieved from on 18 March 2020.

[2] DiJulio, B, Hamel, L. and Brodle M. (2018). Loneliness and social isolation in the United States, the United Kingdom, and Japan: An international survey. Retrieved from on 18 March 2020

[3] Bedei, C. (2019).How I deal with loneliness when my disability stops me from leaving the house. Retrieved from Refinery 29 at on 18 March 2020.

Snapchat photo of me with a silly stretched out face and a caption that says "Meet My Work From Home Co-Worker

Image: Snapchat photo of me with a silly stretched out face and a caption that says "Meet My Work From Home Co-Worker"