Masks, please.

This blog post will be a little more serious than my usual ones. There will be fewer cuss words, fewer jokes about politicians, and fewer references to pumpkin spice products. But, please keep reading, anyway.

A few weeks ago, I was invited to speak at a conference about my disability— Spinal Muscular Atrophy. This conference is a way for medical professionals to learn the newest research and collaborative ways to improve patient care. As a person with SMA, they wanted me to offer my perspective and feedback to the attendees.

I quickly agreed. Highlighting the lived experiences of disabled people is something that is often missing from events like these. Nothing annoys me more than having nondisabled people talking about how best to “care” for us without any effort to elevate our disabled voices. So, any chance I get to promote disability awareness– I am definitely going to take it.

So, I was all-in on speaking at the conference. After all, the knowledge that I have as a person that has lived with SMA my entire life is just as valuable (if not more so) than a doctor with four framed degrees on their office wall.

I started planning what I would say. What to wear. What topics seemed important to me. How I needed to make sure not to use any four letter words– which I tend to do, even when I don’t mean to. (I’m working on this. Really.)

However, after I happily agreed to participate, I found out something that changed everything. Masks were voluntary at the conference— they were not required. And the only way I found this out was that I had to directly ask an organizer about this safety protocol. If I had not asked, I would have shown up to the event unaware of this.

So, in summary:

A medical conference about Spinal Muscular Atrophy (one of the most complex, deadly genetic diseases in existence) seemed to be okay with not making masks a requirement to attend their event.

The reason for this decision? The conference organizers didn’t want to “impose additional requirements” on attendees. (The targeted demographic for the conference being medical professionals— who are nondisabled).

Yet, it didn’t seem to register that they were now hosting an SMA conference where an actual SMA person doesn’t feel comfortable attending.

Now, I know I’m not in PR, but this doesn’t have good “optics.”

In addition, many of these medical professionals will interact with high-risk SMA folks regularly. They don’t think a masked event is a good idea? I’d think the only thing they’d want to bring home from the conference is a free T-shirt and a stale poppyseed muffin from the breakfast bar— not an infectious disease.

To be perfectly honest, when I learned this, my stomach dropped. I felt nauseated. I felt tears prickle the corner of my eye. (It’s ableism at its most basic— prioritizing the wants/whims of the nondisabled to the disabled’s exclusion.)

Yet, a part of me was not surprised given how the world is trying so hard to return to normality. But, for those with SMA (and other disabilities) we’re endangered when society tries to act like the last 2.5 years didn’t happen.

Disabled people, especially disabled people of color, have had the highest mortality rates for COVID-19— and the lowest access to health care. This pandemic has been real to us in a way that it hasn’t been for other people.

The trauma of this continues for us each and every day. Yet, while society is now trying to “live with the virus,” disabled people are the ones more likely to die from it.

As a result, within the disability community, masking is seen as a form of accessibility. Like elevators, ramps, ASL interpreters, closed-captioning and large-print. Masking (along with testing and vaccines, of course) allows high-risk people to participate in society more safely, securely and fully. It is a way to say, “I care about you. I see you. I want you here.”

Therefore, despite my initial enthusiasm, I won’t be attending this SMA conference. I am disappointed and sad. Disability can be isolating, and it cuts a little deeper when society displays such obliviousness.

So, I am left with this final suggestion: if you are planning a public event, please consider the disabled when you do so. By going beyond the basic policies of your city/school/company, you can ensure your event is more accessible and inclusive. (After all, those policies were made for political/economic reasons that suit the nondisabled masses. Not people like us.)

Don’t forget: the disabled will never be able to take a seat at the table unless we feel safe to do so.

It’s up to you to help make that happen.

UPDATE: Upon reading this blog post, conference organizers changed the policy to make masks mandatory. As a result, I decided to participate in the event. While I am happy they reconsidered, I’m also disheartened by the lengths that disabled people like me have to go simply to have our needs met. This extra labor is exhausting— especially when many of these accommodations should already be in place. —E.

The Pay Gap

(the full-version can be found here at the Anthesis website)

Most are familiar with the notion of pay gaps— when different groups of people earn different amounts of money for doing the same work. Much scholarship has been devoted to gender pay gaps, and in recent years, to the pay gaps experienced by people of color. These conversations are essential— for these disparities deeply impact the daily lives of many people, and ricochet outward into society. They can influence social policies, laws, economic opportunities and— at the core of it all— who, and what, we truly value.

However, there is a pay gap that gets very little attention, even though it’s right there under our very noses: the disability pay gap.

While the statistics can vary, a disabled person earns an average of 15-37% less than their able-bodied counterpart. Given that many disabled people have added disability-related expenses that nondisabled people don’t have (higher medical costs, added transportation costs, adaptive technology costs, etc.), these pay disparities are extra damaging to the livelihoods and independence of disabled people everywhere. It’s worth noting, too, that these numbers can even be worse for disabled women and disabled people of color, as they also face the additional gender and racial pay gaps, too.

There are many reasons for these pay disparities. To fully grasp the heart of this issue, though, we must shed light on some of the ableist viewpoints that have made the disability pay gap what it is today:

Ableist Myth #1

— “Paying a disabled employee less is okay because a disabled person is not as productive as a non-disabled person.” This myth is the cornerstone of the disability pay gap. Despite some evidence to the contrary, most don’t believe disabled workers are as productive as their able-bodied counterparts. So, this notion is used to justify lower pay for disabled people.

Ableist Myth #2

— “Disabled people get lots of help from the government, so there is no need to pay them the same as non-disabled people.” The myth is a double-edged sword. First of all, not all disabled people qualify for disability benefits. Secondly, for those that do qualify for assistance, the broken benefit system forces the disabled to subsist on poverty-level (and often sub-poverty level) resources and aid. So, what the disabled actually receive from these programs is far less than society believes.

Ableist Myth #3

— “I’m doing the disabled person a favor by hiring them in the first place. So, to expect me to pay them the same as a non-disabled employee is just asking for too much.” There is a lot to unpack in this. In fact, there’s so much to dissect that we’d need a steamer trunk and three overnight bags to fit it all. But, at its core— this is Ableism 101. And disabled folks have been hearing stuff like this for decades. Society’s view of a disabled person’s worth and potential is often so compromised by generations of ableism that even imagining that they should pay a disabled person the same as a nondisabled person feels unreasonable and demanding.

Ableist Myth #4

— “If I hire a disabled employee, they’ll just end up suing me for something… and I just don’t want to deal with that.” There is a pervasive myth that disabled people are litigious— whether it be suing businesses for ADA violations or suing employers for discrimination. But, in reality, it is very difficult for a disabled person to sue anyone for anything. As lawyers work on contingency, and lawsuits are arduous and expensive, such legal actions are out-of-reach for the vast majority of disabled people. So, these lawsuits just don’t happen— especially on the scale that people think they do.

Ableist Myth #5

— “Sure, in theory, it would be nice to hire a disabled person, but they just aren’t qualified for this job.” This myth is very widely believed, and by people who, in many ways, want to do the right thing and be ‘inclusive.’ But ableism can be a tricky and insidious thing, often overriding all else— even well-meaning intentions. Of course, this myth also has it wrong. In reality, disabled people are more often overqualified for the jobs they seek. Given the pervasiveness of ableism and discrimination, disabled folks are driven to accept jobs that are beneath their capabilities. And at a lower pay rate, of course. They are also forced to seek advanced degrees and other qualifications or certifications in order to try to stand out in the applicant pool— knowing full well that being disabled is a mark against them.

These myths are just a small glimpse of the ones floating out in the world. You’ve probably heard variations of these, but possibly never had need to examine the impact such misconceptions could have on others.

Now that we’ve learned more about the disability pay gap, we can look to see what we can do to help. After all, it will take lots of allies to unravel these foundational disparities. First of all, we must vote for candidates that support disability rights issues. Read their platforms. Make sure they are actively seeking policy change in these areas. And we need to hold them accountable for it! Next, we must support businesses that hire disabled employees. Your dollar has power— use it wisely. Further, the barriers of finding and maintaining homecare can be a substantial challenge for disabled workers (something that is exacerbated by the pay gap, as well). So, we must tackle that issue, too, so as to fully support the disabled workforce.

Lastly, if you are an employer, there is a big thing you can do. Hire disabled employees!

It’s important to acknowledge that many disabled people are understandably cautious about the jobs they feel comfortable or safe pursuing. So, if you are an employer, perhaps you could add a line at the bottom of your job listings? Something like, “This is a disability-friendly workplace. Inclusivity is a top priority. We welcome people who share this goal.”

While seemingly a small gesture, this could be a signal that brings qualified and valuable applicants to your business. By including disabled workers in all employment-related discussions, you make your business more equitable and forward-thinking.

It’s a win-win for all.

So, let’s get started! Together, we can make these myths a thing of the past.

Ableism: The “-ism” No One Talks About

(repost from my article on the Anthesis website)

When you think about discrimination, what comes to mind? Take a moment to ponder it. In your mind’s eye, who do you picture being discriminated against? How does this discrimination manifest? Where does it happen? And, lastly, why does it happen?

I ask these questions because we all have preconceived notions about discrimination. We may think about racism. Or sexism. Or homophobia. Or religious persecution. Our shared history has taught us to recognize some, more blatant, forms of these discriminations— but, sadly, we have a long way to go to identify and rectify the consequences that have resulted from them.

But there is one “-ism” that very few people know about. In fact, if they’ve heard the word, they likely don’t even know what it means. Yet, it’s an “-ism” they’ve most likely witnessed, and, I daresay, even directly enabled at some point in their lives.

I’m talking about ableism. The textbook definition, itself, is even vague— as if the person writing for Oxford Dictionary wasn’t quite sure what it is, either:

a·ble·ism, noun
/ˈābəˌlizəm/
discrimination in favor of able-bodied people.

No offense to the Oxford folks, but this definition isn’t helpful. Yet, oddly, the sparseness— the vagueness of it— and the fact that the definition doesn’t even mention the target of the discrimination… well, that says a LOT about how veiled and insidious ableism can be.

So, let’s expand this definition a little. Ableism is discrimination against people with disabilities based on the deep-seeded societal belief that they are inferior to the nondisabled. It is rooted in the long-held assumption that disabled people require ‘fixing,” and a notion that they are incapable of being full, independent members of society. Like other “-isms,” ableism classifies an entire group of people as ‘less than,’ and perpetuates harmful stereotypes and misconceptions of people with disabilities.

Ableism can occur in overt, obvious ways— through things like abuse, direct exclusion and denial of access. But, it’s the more subtle forms of ableism that can often be the most harmful to those with disabilities.

I am disabled. I’ve written about some of my life experiences here in this blog. Ableism is something I’ve quietly experienced my entire life— but during my younger years, I didn’t have the language or the ability to put it into words. Or, to really examine what I knew in my bones to be true:

Society saw me differently than others. I was measured to a different standard. Less was expected of me, yet I had to achieve FAR more to be taken seriously. To be heard. To be valued. I had to minimize my disability and shrink it down into the teeniest box imaginable. Even if I knew I couldn’t manage it. Even if I knew it wasn’t sustainable for me in the long run.

You see, ableism demands these things of the disabled. Because being less disabled means that society values you more. You will have more access to education, employment, and economic opportunity. You will be listened to— and you will have more access to the healthcare and community services you may need.

Society perpetuates these values day after day. Ableism is baked right into the foundation of it— like walnuts in a loaf of banana bread. It’s the reason why the disabled are always one of the first groups to suffer during times of upheaval, like the COVID-19 pandemic. Ableism teaches us that the disabled are more expendable than the able-bodied. We see those values playing out right now in real-time.

There are undercurrents of ableism in the protests to masking, vaccine requirements and other public health measures. These protocols serve to protect the disabled and vulnerable, but as many of these protesters see themselves as “healthy,” they don’t see why they must do these things. They subconsciously believe their rights and their value exceeds that of others. Why do they think this? It’s not simply a matter of “selfishness” or a lack of “morality” (that’s too simplistic, and also, untrue). You see, it’s ableism that justifies this position in their minds. Ableism is what subtly reinforces the idea that they are superior to the ones they are being asked to protect.

This dark side of ableism can be very dangerous for the disabled. For that reason, it’s the one that many people don’t like to talk about. It makes folks uncomfortable. After all, society is invested in the narrative that it “takes care” of the vulnerable among us. We want to think this is true. And, while we do great things to care for others (we really do!), we still have a long way to go to achieve equity for the disabled. To achieve full personhood for the disabled.

No discussion of ableism, however, can be complete without acknowledging the added barriers and discriminations that disabled people of color experience. All the challenges of getting access, accommodation and resources are exponentially compounded for the disabled in communities of color. This is why disabled people of color are in the highest mortality group for COVID-19. Ableism and racism can combine in ways that can be deadly. We must not be afraid to acknowledge this and address it. No work to combat ableism can be fruitful without efforts to tackle these added racial disparities.

The disability community needs allies in these efforts. Our voices, alone, won’t make things change. Do you want to do your part? If so, I recommend that you learn more about ableism— and all the ways it can show up in our daily lives. My explanation above is rudimentary, so there is much more to learn. Here are a few links to check out:

Death by a Thousand Words: COVID-19 and the Pandemic of Ableist Media by Imani Barbarin

Disabling Ableism TEDtalk

What is Ableism?

This brief list is just an entry point. After all, the disability community’s experience with ableism is as diverse as the community itself. Yet, there are commonalities that bind us together. So, your first step is learning to recognize ableism when you see it— because, trust me, you will see it.

And once you do see it, you will have no excuse not to do anything about it. The power to make change will then rest with you.

Let’s get started, shall we?