S03, Ep. 04: Disability in Crisis

 After an eight month hiatus, Mandi returns to highlight the effects COVID-19 has had on her as a disabled woman and brings to light larger issues the pandemic has revealed for society.

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Transcript

Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.  

[Upbeat Background Music]

Mandi: It's been 8 months! I can't believe the last time I recorded here was on Easter. I had to get one more episode in for this crazy year that is 2020. It's appropriate that it's in the Christmas season. 

Last we spoke, I started talking about my personal Deconstruction journey. I had every intention of getting deep into it, and still do, but I can't pretend the craziness of this year didn't happen. So, for this episode, we're going to do a bit of a year in review and I'm still going to touch on how, even, maybe especially, in times of crisis, the experience of a disabled person like me varies greatly from our non-disabled counterparts, for better and for worse.
    

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[Doorbell Sound Effect]

Mandi: When I shared with you all last, it had been less than a month since New York, and really the world, went on pause. Everything closed down including schools, restaurants, all businesses that weren't considered essential. To be honest, not much had changed for me during my weekdays. I have been accustomed to working from home since I started with KEEN New York. What was different was having my kids home 24/7. This was different for many families, but I want to highlight here something the disability community might hashtag disabled problems. 

Many people with disabilities have shared with me the need for a schedule. I'm not talking about the kind of schedule non-disabled people have like going to work, cooking dinner, etc. I'm talking more about the great need to plan. For example, my best friend, who also has a disability, and I almost never, in fact I can certainly say never, have called each other up and gone out that same day. Going out requires much planning. We are not only considering our own schedules, or each other's schedules, but we must also plan based on what I'll call, and what the state calls, our circle of support. See, we both need someone to help us leave the house, but then we need to make sure someone is home to help us back in. We also have to plan on good weather. Once we're out on our own, whatever we have on typically stays on. This means, if we go out in the cold Winter, then we are spending the day with our coats, hats, and scarves on. The opposite is true as well. If we go out in the sweltering sun and wear shorts and tank tops, then that's what we're stuck in, even in the frigid AC of the buses, movie theaters, and restaurants. 

I can hear it now - two overwhelmingly ignorant responses to this. The first, and perhaps the more insulting of the two, "you go out alone?" I'll be honest, growing up I didn't think I could. I was basically led to believe that I'd have to have someone with me all the time. I think around college is when I first started to find this greater independence. It started with me having the freedom to choose who I went out with, which often happened to be someone I was dating. After I got married, I really found my independence, happily venturing out on my own. The anxiety that most people express to me about me traveling independently is regarding my safety. I think some people view me as more vulnerable or a greater target because of my disability. In some ways this may be true, but I have more often than not found the opposite to be true. Most people actually look out for me. When I lived in one of the toughest neighborhoods in NYC, I remember the prostitutes and pimps always looking out for me, making sure I got to my building safely. 

The second response I often get about the struggles I face when traveling alone is that all my issues would be resolved if I traveled with a Home Health Aide or Personal Care Worker. There are many, many occasions when I do. This does allow me greater independence under some circumstances, but in other ways this limits me too. I'm constantly having to consider this other person when they travel with me. Is there a place for them to sit that isn't too close to make my conversations awkward or filtered? What time do they need to clock out? Do I need to slow down my wheelchair to allow them to keep up on foot? Is the distance we're going too far? Maybe we should take a train or bus. Of course, there's the added cost. In some countries, professional caregivers are given a card that acts as a pass so that neither they nor their clients incur additional activity fees. The U.S. does not currently offer this, so if I'm accompanied to the movies, a restaurant, a concert, anything that requires a ticket, I am paying double. So there you have it. I travel independently because in reality I'm no more in danger or safer than non-disabled people and it avoids awkwardness and saves me money.  

Back to my main point for sharing all this, disabled living requires a lot of planning. So, when the entire country closed, and left me and my husband remotely educating our kids, this was a big struggle. We have to add to this the fact that two of my three workers stopped coming to work. One was sick and the other at higher risk so they were being cautious. Despite being used to working from home, I was not used to being home all day, every day, especially not on weekends. Weekends were KEEN days and one of our sayings is, "KEEN days are the best days!" Within two weeks of being closed down, KEEN pivoted to virtual programs. This was great and allowed us to serve youth with disabilities through these extra challenging times. It was through my continued service that I realized how blessed I am.

I work with one family who literally couldn't leave their home. They did not participate in the great toilet paper war. They were not going out hoarding groceries. In fact, they didn't even leave their homes to get much needed medications. They basically went under self-imposed house arrest because the risk of the child getting COVID-19 was too great, the possible consequence unbearable to imagine. 

Another terrible experience I did not have to face, but personally know families who did, was the separation of people with disabilities from their primary guardians, loved ones. The experience may be similar to parents or grandparents who were in nursing homes. People with disabilities who were institutionalized or in assisted living facilities were locked down, unable to receive visitors and unable to leave. I have the pleasure of working with many youth on the autism spectrum so I know firsthand how important and beneficial routines and schedules are to them. I know that disruptions to these schedules can often trigger maladaptive behaviors including aggression, especially in those who have difficulty communicating on the best of days. These are the kinds of stories that I did not see in the media. 

On the other side of that same token, those of us who continued working, even those disabled people on the front lines, were still doubted, even when needed the most. I hope to one day have Andrea Dalzell, who many know as The Seated Nurse, on this podcast.  Her struggle for equity and inclusion goes back long before the pandemic, but when everything hit the fan, she suited up in her scrubs and mask and cared for patients from her wheelchair. She publicly shared how she was doubted, most often by peers in the profession. I'll leave her story for her to share, but her experience is one too commonly faced by disabled people, the constant barriers of doubt that try to set us up for failure.

We thought, hoped, and prayed that as Summer arrived, the pandemic would be gone. Sadly, this didn't happen. As Fall set in, we saw a resurgence of  COVID, especially as people felt more emboldened to ignore safety precautions. As with too many things, this pandemic has been used as a weapon, mainly a political one. Before I digress too far down that rabbit hole, though I'll likely come back to it, I want to highlight one last big issue brought to the forefront by COVID, though this is in no way meant to indicate that this is the end of the list. 

This goes back to employment, but in fact addresses an even bigger principle. The unemployment rate for people with disabilities is outrageous. According to the U.S. Bureau of Labor Statistics, the unemployment rate of people with disabilities has continued to be twice as high as that of non-disabled people. I have discussed some employment barriers for disabled people in past episodes, but access and flexibility, in my opinion, are often at the top of the list. The disability community is often blocked from employment because of the accommodations needed, often including physical barriers being removed that would be too costly, and flexibility in work schedules. For me, getting to an office at 9am is a real struggle. It can take me anywhere from 1-2 hours to get from my home to Midtown. This is because I have to navigate finding accessible public transportation. Even the vehicles designed to service the disability community makes people late all the time. If you add in inclement weather, my travel becomes more difficult. On top of that, I have to account for broken down elevators and curb cuts that haven't been shoveled. This doesn't include the fact that I am not getting myself ready to begin with. I have to wait for help and depend on others for my activities of daily living. To arrive to an office consistently at 9am, I would have to leave my home by 7am the latest and get up by 5:30am the latest. This means I'd need a caregiver to arrive by this time, or have my husband wake up around 5am to get himself ready. This again doesn't account for also getting my two toddlers ready. My point is that it's just not sustainable for me. Don't get me wrong, there are people who do this, yes disabled people too, but it just doesn't work for my situation.

My point in bringing this up is that there are countless jobs that the disability community was told could only be done in an outside office. Whether the excuse was security, accountability, or even morale, we had been led to believe that jobs we were capable of doing, we could not be offered because we requested to do them remotely. Then the pandemic hit. The longer it went on, the greater the need for people to get back to work without being mushed together like sardines. Thus, people around the globe started working remotely from home. Jobs that were once deemed too confidential to take out of the office are now being performed by people in pajamas from their beds. Jobs that required meetings be in-person, face-to-face, are now accomplished just as effectively on ZOOM or Teams. Those mandatory meetings that everyone dreaded are either much shorter or non-existent, even being done through email or chat. While this is a benefit for people with disabilities, especially during the interview process (though this has its own big problem, which I'll address another day), it also spoke a powerful, hurtful, and angering message to people with disabilities. You see, the thing that changed was the who. Who needed accommodations? When non-disabled people needed the accommodations of remote access and flexible schedules, it was granted. It didn't matter that disabled people fought for years to contribute. All that mattered was that those who really matter in society needed the change. This is an awful message to send, but highlights once again the deep-rooted discrimination, prejudice, and inequality still faced by people today, even in 2020. 

[Bling]

Mandi: I know there are many many stories to share from this year. Whether a success or trial, let's get it out before the new year. I'd love to hear from you! Go download the Anchor mobile app and subscribe to this podcast so you can leave me a voice message. 

This podcast is also available on iTunes, Google Podcasts, Spotify, and any other place you like to listen! Visit my website linked in the description to get access to all the platforms.  

[Mandi voiceover to 'Compton' music]: On my next episode, I'm going to talk about the kind of drama-filled housing journey I've been on during the pandemic. ‘Til next time Beauties!