Next Steps Part 3: Who Gets to Speak, How, When, and Why?

Hello, readers,

Happy spring! My area of the country has experienced some unexpected frigidity but will be warming up soon. I’ll actually miss said frigidity, but well, you can’t have everything you want, all good things must come to an end, and so forth. On to a new season, and on to a new post and some more next steps.

I’m still enjoying connecting with other autistic and disabled people on social media, mostly Tumblr. I’ve found it’s kind of a hub for the autistic, otherwise neurodivergent, and chronically ill, specifically. What’s interesting though, is how that hub has made me think of disability advocacy and discourse. Discourse meaning, how people with disabilities themselves talk about their disabilities and their experiences.

And indeed, why shouldn’t we have discourse? Every other minority group does, whereas disabled people tend to be spoken for and about. Now, that speech can be benevolent. That speech can come from legitimate abled allies. But where other minority groups speak for themselves alongside having advocates, people with disabilities tend to speak for themselves much less than advocates speak for them. In some cases, the advocates–family members and caregivers, occasionally friends–speak with us, but…well, you get the picture.

Perhaps because of this, when I go to hubs like Tumblr or disability news outlets like disabled-world or disaboom.com, I see and hear evidence that said outlets are “echo chambers.” One vocal Tumblr user, @autistic-af, specifically describes the site as an echo chamber for autistics with “low support needs” (please see post regarding “support needs”). This user and others are rightly frustrated that other disabled users, such as autistic people with higher needs, aren’t heard as much, either on social media or in the real world.

And I get that, on many counts. As far as social media goes, for a lot of people with disabilities, it’s either our only outlet or at least a big one. For me, it is or has become the major place I communicate, either with people I know or people I’ve never met but who share at least some of my interests, unconventional though those may be. It is the place I have not only discovered that other disabled people exist, but that yes, other disabled people with low support needs exist and are capable of communicating and experiencing at my level.

This is in no way a dig. Remember, I spent my entire life as the one and only disabled person in the school, club, or group who was not part of the segregated “disabled version” of whatever was going on. Remember too, that I was pushed toward the people who were segregated, often because I was assumed to be some kind of “whisperer.” I felt awkward and uncomfortable because of this assumption, and because the segregated population would tend to see me as a person to “care for” since my physical disability was obvious. So as erroneous as this is, I grew up believing that yes, I am disabled, but no other disabled people are like me. That didn’t make me think I was “better”; that made me think I was an anomaly, a freak. It made me think I was a bad person because people implied I was a snob for still wanting to hang out with kids and teens on my level. I spent my first 18-20 years stuck in this limbo of, “You’re too disabled for the abled, not disabled enough for your own minority group. You belong to neither.”

And that brings me to the real-life side of this conundrum. I understand why disabled people are frustrated there, too. Because if I’m still gobsmacked that people like me exist all over the internet, imagine how it feels to leave the computer and know that IRL:

-Very few people are discussing disability-related topics (and if I do, I get, “Why is it always about this with you”)

-Those who are, are generally discussing these topics in a very “traditional” way (e.g., if it’s not a Facebook page specifically aimed at people with autism, you can bet your last dollar they’re promoting ABA in some form. And even if they aren’t promoting ABA, PECS (a relative), or the basic erasure of neurodivergence–yeah, I’m not sure what the best space is for a lady like me who’d like to take her skills out into the workforce and the real world. Not when she’s unsure she’d be allowed to do that without minimizing her particular brand of social and sensory interaction).

-Those who are, are often parents (which I am not. I don’t want to get into it because it wasn’t disability-related and involved close family, but a few months ago, I made a major mistake on social media involving a parenting site and was basically told, “Don’t you ever go on these sites and give your advice or opinion!” Never mind that I’m 37 and could’ve come to that conclusion alone, and should decide for myself where I go on the internet and what I say there, but hey).

-This is the biggie: Even if the above three were not true, imagine how it feels to leave the computer and be reminded, every single day, that IRL, in 2023, concepts such as, disabled people should have agency, disabled people know their own limits, disabled people should get to interact with their disabilities how they want…in the 21st century, all these and more are still “hot takes,” if not completely foreign concepts!

We’re not done, people. Not by a freaking long shot.

But then again…and I’ve asked myself this question a lot lately. Do I even have a right to speak anymore? Because if this is the experience I have, how must it feel to go back to real life, not only knowing these things but knowing, even social media isn’t a guaranteed safe place? Not because the people there are all ableist. In fact, some places on social media work not to be ableist. But because social media is an echo chamber, and the voices in the echo chamber are–gulp–the verbal, the “smart,” the low support needs folks, the “high-functioning,” if you must?

What if They See Me as the Next Potential Bigot?

I’m telling you, that hurt. It really did. For a minute, I thought about closing this blog for good. Because there are so many people who are more affected by CP than I am. They know physical and occupational therapy better than I do. They use mobility aids where I don’t. They encounter ableism on the daily or the weekly whereas yes, I’ve encountered incidents, and those incidents have wounded me, but they haven’t been constant (at least, I hope not. Remember, I grew up in a time before social media, microaggressions, and whatnot).

There are so many people, especially females, who know autism better than I do. They’ve been abused over it when I have not, at least not flagrantly or purposely (I could argue semantics surrounding certain incidents or patterns, but for example, @autistic-af describes an incident in their early childhood. They found pinecones intensely disturbing from a visual and tactile standpoint, to the point of a phobia. So their mom waited until they went into a park restroom–and stuffed their jacket full of pinecones and forced them to keep the jacket on. I never went through something like that). There are autistics out there who have been shamed and blamed for having public meltdowns; I have not. There are autistics out there who stim “loudly” and have had to fight for the right and safe space to do so; I have not. I have never been a JRC inmate. I have never been to an ABA session as such. I have never lost my ability to speak at an inconvenient time, or experienced sensory issues so intense that I vomited, hit the floor screaming, eloped, or anything like that.

I could understand why other disabled people, particularly my fellow autistics but also those with chronic illnesses or different manifestations of cerebral palsy, MS, spina bifida, whatever, were angry. I could understand why people with intellectual disabilities were angry. And for several moments (meaning the pockets of time I would go to these hubs, or think about my next post here), all I could think was, “What am I doing, other than contributing to the anger?” I felt the way I do when certain abled people, including those I love, imply that by pushing so hard for disabled people, even the most “severely” affected, to have agency, I’m actually hurting them.

So Who Gets to Speak, and How, and When, and Why?

So, here’s what I did. I sat myself down and I thought it through. Right now, I’m thinking about something my PT Jenny said during a session. She’s great about telling me what my strengths are, and she says things like, “I love how you can tell me exactly what you’re feeling and why, and what’s wrong, and how it makes you react.” She says things like, “You know yourself so well, your intrapersonal intelligence is so on target.” And so I’ve told her why this is–how, being an introvert, being on the spectrum, being of an intellectual bent, I kinda had no choice. I’ve told her how, given compassion and time and space, I can sit and say to myself, physically or emotionally, “Okay. Why did your body tell you that? Why did that muscle tense, or your vestibular system glitch? Why did you feel like that, in that moment?”

So I said, “Why do I feel this way? Is it really because I fear I’m a bigot? Is it because I’m afraid the “woke” agenda is going to come for me?” And yes, that may have factored in. But I also realized a few things about the “why,” like:

-I was angry and frustrated, too. As in, I finally find my own people, and what are they doing? They’re fighting! They’re participating in the language baiting and arguing that I’m trying so hard to fly above (Ravenclaw vibes), but they’re trying to pull me down and the gravity’s kinda strong, not gonna lie!

-I was inwardly shaken because I’ve felt this way before. Not gonna go here, but for a lot of reasons, most of them pointing back to undiagnosed autism, I’ve spent my life being accused of, not necessarily things I didn’t do, but motives I didn’t have. Like, “Let’s try to have a good day,” “You’re always so negative,” “You’re not happy unless you’ve started a fight,” “Do we have to do this?” A lot of which is still going on, BTW. It’s all basically a matter of, “We’ve decided for you what your motive and POV is, so we’re not going to consider any other alternatives.” But then, when I say something to them like, “I know you think X,” (based on their behavior) or, “I didn’t bring this up because Y,” it’s, “You’re not a mind reader! Don’t put words in my mouth!” So, it felt like this whole issue of, “These hubs are echo chambers for the functioning smart people,” was another, “This is their/her motive, they’re shutting us up” when I didn’t mean or want to do that.

-I still had more to hear and learn from my counterparts who legitimately were and are not being heard, in real life and on the screen, because the abled majority still believes that AAC solves everything, that if you can’t speak, it automatically means you can’t brush your own hair or teeth or use the toilet (yes, this has happened, apparently, abled people can be such ding-dongs), and other such baloney.

So then, what’s the verdict? Who gets to speak, and how, and why, and when?

Well, the “why” is the easy part, in that–write this down, separate line:

We all get to speak, because we all have disabilities, we all have these experiences, and we all have our own valuable stories to tell.

As to the who, how, and when, a few tips, learned up close and personal (and still learning on the job):

-I’ve mentioned this before, but it bears repeating: Speak to the disabilities and the experiences that you have, emphasis on “experiences.” As in, yes, I can and will speak to CP, but I cannot speak with any authority on wheelchair use, so I will not. I may drop in a side margin note on say, the lack of wheelchair accessibility in bathrooms and showers because even though I’m ambulatory, that’s an accessibility lack that can affect me also (though not always). I may speak to the fact that certain ground, such as gravel or cobblestone, or sidewalks with huge cracks, need better maintenance, because that affects me in that, just like a wheelchair-user, it could get me injured. But I will not speak on wheelchair use in and of itself. I may well speak to the problem of bullying and exclusion, and the fact that students with intellectual disabilities get hit hard. But I will never speak to intellectual disability itself or pretend I know anything about living with it.

-Never appropriate someone else’s story or assume your “smaller” experience equates to their “larger” one. Again, I’ve mentioned it, but again, gonna repeat. For example, I believe I had/have PTSD from the Internship from Hell. I can discuss it calmly as “a thing that happened,” but if asked to relate specific, detailed incidents, especially to a third party, I still cannot speak of it without physically shaking. But I would and will never relate or equate this to the experience of a combat veteran, ABA survivor, rape victim, you name it. A football player using crutches for a broken leg should not equate his injury with the permanent disability of an elderly polio survivor.

-Understand what disability does and does not mean. This falls under the “how” part. As in, we, yours truly included, have wrongly assumed some things about certain disabilities and disability manifestations. For instance, abled people and people with Level 1 autism have *somehow* assumed that if a Level 2 or Level 3 autistic cannot or does not speak, that person also cannot complete activities of daily living. Nope, not true!

-Also on the “how”: Allow people to determine and speak to what is and isn’t “disabling” to them. I’ve been surprised, and I admit it, humbled, by some social media autistics who have come out and said, “Yeah, my autism is a disability/disabling. So [freaking] what?” I’ve had to sit with the idea that some physically disabled people say, “Yeah, I’m a burden. I’m a burden to myself, if you wanna know” (paraphrase). “That doesn’t mean I don’t get to live!” (Because our society at large has decided that the abled portion of it knows what “burden” means, and if you fir that, you shouldn’t be living and draining the rest of us. Well, nuts to you and your stupid luxury car, too. That’s a riff on something my dad says, which is basically, “F you and the horse you rode in on.”) If they wanna call something disabling or a disability, you and I need to shut up.

-Every person defines him or herself first. Now, if you’re like me and believe in God (or a god, at least; out of my respect, I’m only giving mine the capital G), then that deity defines you first and best and really, only. But outside of that–if you define yourself as smart, or low or high support needs, or disabled, or not disabled, or a different neurotype, or whatever, you’re not a bad person and you still deserve to speak. I won’t say “speak your truth,” because for me, it is not “your truth,” to me, there is The Truth, and I can’t betray that. But you deserve to speak no matter what. The one definitive thing I will say here is that the language discourse, the infighting, must somehow stop. And if I can help by posting this, I will do that and am glad to have done so.

-Keep pushing to speak and be heard in real life. Because social media and the screen is great. They are tools I’m glad we have in this era, and we must use them the right way. But until what we talk about on the screens becomes real, we are not done, not by a long shot.

So, what’s the next step? You got it. Get out there and let’s keep talking–all of us!

Next time: Is independence what people with disabilities really want? The answer might surprise you–it sure surprised me. Look for it in Next Steps Part 4.

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