protest sign leaning against a door. It reads "Racism is a pandemic'

So, it’s once more time for A Chronic Voice’s monthly linkup. This month’s words are unlocking, limiting, studying, healing, and watching.

This month, it felt really appropriate to focus in on our ability, as disabled folks, to help embody the changes that could help our country heal.

Covid-19 has served to highlight the inequalities and just how severely broken many American institutions are, and I want to encourage everyone to think about how you as and individual have been impacted, and what you can do to help fix these issues!

Watching my country recognize its brokenness

I don’t know about you, but I’ve been watching the news a fair bit lately.

I’ve chosen to watch primarily progressive sources because not only is that how I lean, but also I just am not up to dealing with casual racism and ableism that can occur on right-leaning sources.

I am proud of the Black Lives Matter protesters in the streets.

Proud that they are marching for black lives, and proud that they are pushing for equality in treatment.

I worry about their safety – they are protesting police brutality and being met by police brutality.

For the most part #BlackLivesMatter protesters have done everything in their power to protect themselves while protesting

I worry about their safety since there is a pandemic going on, which is why I am not out there with them, marching.

I absolutely support these protests. Racial minorities are being infected with COVID-19 and dying from it at much higher rates than whites.

The choice that black protesters are facing is bleak.

Don’t protest, and risk being infected and possibly dying of COVID, or being killed on the streets for being black, or go out and protest these risks, while slightly increasing their risk of contracting COVID.

I am proud of all of the allies who are marching with them – others who recognize this injustice and who have decided to slightly increase their own risk of getting COVID by protesting(wearing masks to mitigate the risk).

Too many people are going out without masks, not taking proper precautions, and catching and spreading COVID for no good reason.

I want to be clear. The protesters do not appear to be spreading COVID in a significant way. Other activities, like crowded bars, maskless rallies, and the anti-mask protests earlier this year did, but while it’s always possible for individual cases to happen, as a whole, these protests do not appear to be significantly increasing COVID cases.

Why? Because they understand the risks and are wearing masks.

Unlocking empathy: why the disabled community should support the Black Lives Matter movement

While George Floyd’s murder was the final straw that triggered these protests – the underlying cause of these protests is systemic racism and the inequality that goes with it.

Why should we, as disabled people, care? Well, because we are also a minority group that is constantly facing systemic bias.

Also, we all have intersectional identities, and so there are many people who are both black and disabled – and they are dealing with some pretty horrific treatment.

Disabled people are also disproportionately killed by police violence. We are also often faced with bias in our medical treatment.

We are subject to discrimination by communities some of us are part of – such as the LGBT community.

Disability is one of the most intersectional identities out there.

Everybody is just one accident, incident, or environmental trigger from becoming disabled themselves.

The disabled community is intersectional with the black community, and also faces discrimination and bias.

We, too, are subjected to bias and assumptions by others – and we, too, will benefit from any work towards equality of treatment or mitigation of bias.

If the Black Lives Matter protests lead to major police reform, the disabled community also benefits.

If the Black Lives Matter protests help pave the way for major reform of our broken health insurance system – the disabled community also benefits.

With the Black Lives Matter protests throwing a light onto systemic bias, the disabled community can remind the rest of the world that the system is also biased against disabled folks – many of whom are also black.

We stand to benefit from the black lives matter protests – so doesn’t it make sense for us to step up and help them make it happen?

Limiting our options

The existence of COVID-19 has limited how we can participate in society, adding more limitations onto our already limited options.

I am not high-risk. But I am medium-risk. My immune system isn’t medically recognized as compromised, and I don’t have lung or heart issues – but 20 years of chronic illness means that I know from personal experience that most minor bugs seem to linger in me, so I really really don’t want to experience something more severe if I can avoid it.

In my case, I recognize that my immune system is less than stellar, and my partner Al has an autoimmune disorder.

Both of us are not categorized as ‘high-risk’, but we’re definitely higher-risk for our age. So, for our own safety and to help those we love, we need to minimize our likelihood of being exposed to COVID-19.

How to we do this?

By not having many close interactions with other people.

By staying home.

We don’t go out to eat, do much shopping, or much of our normal travel. I haven’t been up to New York City since March – normally, I’m there about once every week or two.

Too many public spaces are inaccessible right now.

We wear masks if we do go out. We’ve made fewer(and much more cautious) beach trips, and haven’t gone out to much of anything – no marches, or festivals, or fairs.

We’ve been cautious and following the standard recommendations that the CDC and WHO have made.

Al and I are doing these things, but we are facing additional challenges we can’t control.

Al is working again, and the organization he works for isn’t as focused on masks or COVID safety as we’d like. Not everybody at work is wearing masks, and we don’t know what risks they are taking at home.

Studying the possibilities

I’m also growing in awareness that so many things that the disabled community has requested from society over and over again is now being managed because of COVID-19, and I’m left wondering whether we’ll end up with more options in the long term, or if there will simply be arguments of ‘that was an emergency, we’re not going to keep doing it’.

For the first time, many people are working from home. This is an accommodation that disabled people have wanted and hoped would happen for a long time, one that would help many of us shift from work being incredibly challenging to work becoming a realistic option.

People are participating in all sorts of things remotely – so suddenly things that were never accessible suddenly are – I attended virtual Pride events, virtual Juneteenth celebrations, virtual concerts, and online meetings for the bisexual community.

While these virtual events aren’t the same as the real thing, they are much better than nothing, and there is still some connection with both the performers and the other viewers.

As the primary audience, the cameras are set up so that I can see and hear everything that’s available, and it’s nice to get that level of consideration.

Focus is being put on broadcasting to homes, or on making it possible for more people to see or hear or experience it.

All of these changes are happening, and all of these steps are being taken to make things more accessible or easier to participate in and I can’t help but wonder if this is going to be left as just a phase during the pandemic, or if more sweeping change can take place, allowing those of us with disabilities to participate in these spaces that we’ve traditionally been more limited in terms of participation.

We, as a community, can help make this a longer-term reality.

Not having in-person meetings has meant that I’ve been participating in many events via zoom or other platforms

The more we participate in these events, and make it clear that we appreciate them, the more likely it is that these practices may continue.

While I was active in BiRequest, I suggested that if we had enough remote involvement beyond our regulars, we should continue having virtual meetings on top of our in-person ones.

A bi group based in Connecticut already plans to do that(I plan to participate in their meetings).

If you haven’t already, think about what virtual events or groups you might be able to find or join now, to build or rebuild your social network.

When you find one, let them know how much you appreciate virtual participation(and/or learn where, when, and how they normally would meet and evaluate if you could participate whenever they return to meeting in person- and give them feedback on their accessibility).

Many groups are struggling right now, so your participation could be the spark that helps them get through and rebuild.

I’ve personally decided to put energy into activism in ways I haven’t in the past. I’ve reached out to Showing Up for Racial Justice(SURJ) and The Poor People’s Campaign to see what I can do.

I’ve been using the Resistbot program to contact my representatives about bills I support(and to learn of their existence).

I’ve been watching my social media to find online events I can participate in, activities I can do, and groups I can follow that will help me help others.

I’ve made a point of reading up on recommendations and taking them – following activists for both the disabled and black communities(and even better those who are intersectional to them), and doing some reading and self-education to help myself grow and better understand these movements.

At this point, the Poor People’s Campaign is doing most everything virtually, so it’s been great to participate and see how I can help out both the national program and the slowly-growing NJ contingent.

I’ve been working on my patience as I alternate between wanting to be doing stuff NOW and recognizing that every group does things at their own speed and that I need to prove myself to each group because I am a stranger to them.

In the meantime, I keep working on my blogging stuff, hoping to build up my audience and help you(my readers) get the resources you need and the information that will help you.

I’d love it if you joined me in any of these endeavors(I believe all of them are US-based), or found similar programs where you live if you have the spoons.

Healing by helping others

I know that COVID-19 has(quite reasonably) triggered a pretty severe anxiety response for me. My ‘new normal’ during the pandemic includes that higher anxiety, greater fear, and greater uncertainty.

I think many of us in the disabled community have experienced this stress increase both from the changes themselves and from the knowledge that our lives are under higher-risk than usual because of both the virus and people’s poor response to it.

Recognizing the additional issues we’re going to be struggling with, including worsening mental health challenges, fewer social opportunities and more limited access to medical care is important.

Recognizing some additional opportunities – and thinking about how to ensure that they are expanded or continue after this crisis is over would be an amazing step to help our community to grow and flourish after covid.

While this pandemic has revealed a lot of the damage and brokenness to the systems we participate in, I can only hope that seeing this will lead to the damage being recognized and repaired, which could lead to our world being better overall when this crisis fades.

I want to be part of that healing, part of that improvement, somebody who helps us to not only weather the storm, but to use the storm’s damage as a positive excuse – a reason to take next steps into pulling out the rot and building up an even better structure than what we had before.

Doing so will help our community – making all our lives better.

I’ve also learned that many people, myself included, feel better emotionally when helping others succeed. So let’s do it!

It’s so much nicer to do things with company. (image curtesy of: https://affecttheverb.com/)

We don’t have to physically march to help. We can spread the word, we can help the groups organize, we can publicize the events.

We can recognize our own biases and work on correcting them. We can talk to friends, and friends of friends about how we(or they) can help.

We can call out the ‘isms’ when they happen.

We can add our voices to the movement. We can share their stories, our stories.

We can empethize with them.

No, those of us who are white weren’t mistreated because of the color of our skin – but we know that experience of others disliking or underestimating us for who we are.

We know the pain of being dismissed.

We know the pain of being ignored.

We know those challenges that go with being viewed as less-than.

It’s not an identical experience, but the similarity is enough that we have some sense of their struggle.

We understand the pain.

And we can help ease the load and help our black siblings in their push for equality – something we all would benefit from.

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17 Comments

  1. I love that you say healing by helping others, that’s so beautiful. One of the tiny silver linings I have seen here in the UK is a sense of community and helping others, whether it is delivering shopping or medications or volunteering for the NHS.

    1. Claire,
      I know that there have been multiple mutual aid networks set up around nyc (basically neighbors agreeing to help one another), and I am sure it’s happened elsewhere too. A good friend of mine has been sewing hospital gowns, masks, and other necessities for hospitals, since he worked in costuming and wanted to help. There are definitely stories of individuals helping individuals…I’m just hoping we can change some laws and policies too!

  2. I am stunned that Al’s workplace isn’t strict on masks! I really find it to be selfish and scary. I feel people need to really develop more common sense. We need to understand the impact of our actions.

    1. Shruti,
      I know. Things are really strange here in the US. With so many people insisting that it’s all a hoax, or that it’s totally overblown, it’s almost impossible to get a reasonable response. Al is doing backend work at a store. Basically everybody wears masks when dealing with customers(which is good), but many don’t wear masks in the lunch room or the back office space where he works.
      I feel lucky to live in a state with a mask mandate, where there are at least some rules to protect us- but I can’t see covid-19 going away anytime soon here in the US because there is no consistent or reliable management.

  3. You have a beautiful heart, Alison, “I want to be part of that healing, part of that improvement, somebody who helps us to not only weather the storm, but to use the storm’s damage as a positive excuse – a reason to take next steps into pulling out the rot and building up an even better structure than what we had before.” You have given me such insight and caused me to reflect on my own growth and empathy. This is the time to work on healing from within and healing the wider world. This awful, strange time has given us this- a chance to be a part of building a better place for everyone to live and to thrive.

    1. Thank you so much Katie! I think it’s so important to recognize what we can do in this world, as well as our own limitations. I don’t want people to take unnecessary risks, but I also know that some of us are doing better than usual because of these limitations, and while some are struggling, others are blossoming(or have the potential to do so). I hope that more of us find the energy and opportunity to help fix our broken world – especially in ways that also give us, individually, better quality of life!

  4. I’ve also been watching the country and seeing how it’s broken. I would’ve loved to be out there protesting, but chose not to because of the health risks. I hope we as a country have finally learned something from Black Lives Matter.

    1. I’m with you, and not out there for precisely the same reasons. You may want to check out https://www.poorpeoplescampaign.org/ they focus on poverty, and are doing everything virtually! I’ve been participating for a while now and my end up heading an accessibility division for the NJ branch of the Poor People’s Campaign. They are working hard to be inclusive and have systemic bias and racism in particular central to their platform. They are the rebirth of the movement Martin Luther King, Jr. was working on near the end of his life – the recognition that lifting up poor people would be incredibly helpful for black rights!

  5. Thanks for joining us as always in the linkups! Love how you always turn them into fantastic advocacy and educational evergreen pieces! I agree that we as a society need to do better – I mean what’s so difficult about wearing a bloody mask that it needs to be debated, argued, and/or protested against? #firstworldproblems I wish you well my friend.

    1. Sheryl,
      Thank you! Even though I can’t manage it every month – I do try! I often read over the words and see what associations I have with that particular combination – what lessons have I learned, or experiences that I had that those words best fit with. And, other months, I just feel a strong need to write about particular topics, and I find that your suggested words fit into that story remarkably well. Like, in April, I knew I wanted to write something about FND, but your writing prompts determined the direction it took and what aspect of FND I ended up talking about!
      I love the challenge and options that your prompts bring out – and the new and fascinating path your words bring me on.
      Alison

  6. What a lovely, inspirational post, thank you for sharing!

    Here in the UK I have seen a lot of people comparing Covid with seasonal Flu and calling it a load of nonsense and media hype. My own husband couldn’t care less about the pandemic, and his flippant attitude towards basic safety concerns has really driven a wedge between us. He works in waste management, interacting with refuse workers that bring garden and food waste from our county and even as far as Manchester and Bradford, yet he comes home in his filthy uniform and thinks I’m making a fuss about nothing when I complain! Anyway, rant over 😉

    1. Covid spreads in a way similar to the flu, but it’s definitely more deadly and may have more long-term effects! Al and I have focused on being as safe as we can be, but with his work, I’ve accepted the possibility of us being exposed to it. That doesn’t keep me from trying to minimize our other risks!

      I’m so sorry you and your husband are having issues over this – I know that a lot of people have very different interpretations of this disease and having that tension in the household has got to be hard!

  7. Great job using the prompts to once again inform and advocate for other causes. It was a really interesting and educational piece! Well done x

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