6 Reasons Why Disability Accommodations are NOT the Same as Advantages

 

Rant time. If you are disabled in any way and have ever been accused of being lazy, this video is for you. You're not lazy, instead, they're ableist. Welcome to my "Ted Talk."

Watch the video below, or read on for the full transcript.

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Six reasons why disability accommodations are not the same as advantages.

Here we go.

Reason number one involves the difference between equality and equity.

This comes from a really great article I read recently on medium, which I have linked in the description box below. I highly recommend reading that article, and I'm barely gonna scratch the surface of what they covered, and so, please go read it.

The basic difference between equality and equity, is that in equality, everyone gets the same thing.

So, let's say everybody gets a box to stand on, just one box, right? The person that's six feet tall gets a box to stand on to look over the fence. The person that's five feet tall, (knowing chuckle) gets a box to stand on to look over the fence. The person that's four feet tall, gets a box to stand on to look over the fence.

The fact that there's a fence is a problem in itself, that's why I want you to go read the article, 'cause that's not what I'm talking about here. Because systemic problems are a huge problem, but that's not what I'm talking about in this video, so please go read the article.

If each of those people go to stand on their respective box to look over the fence, only the person that's six feet tall is gonna be able to clear that fence. Maybe the person that's five feet tall will be able to like get their forehead over the fence.

I'm thinking about the neighbor in Home Improvement.

But the person that is four feet tall is not gonna be able to see over the fence.

That's equality, every person gets the same.

Equity on the other hand, distributes the resources equitably, so that each person has the same access.

The person that's six feet tall, doesn't need a box at all, they can just stand on the ground and see over the fence. The person that's five feet tall, can like just barely see over the fence. So, they only need the one box, right? Whereas the person that's four feet tall, they need two boxes. So, they get two boxes to see over the fence, that is equity.

This does not address the problem, because there's a fence there in the first place. An individual, by themselves, cannot address that. An individual in a community can address that.

But an individual still has individual needs that they need to face in order to survive, let alone thrive. So, that redistribution of resources in an equitable manner so that the person with greater access needs can see over the stinking fence, is really important.

It's a really important part of equality. So, my main point, disability accommodations are not advantages. Someone may look at the person who is four feet tall and has two boxes being like, "Oh, you are so lucky, you have two boxes." And that is so, (wry chuckle) so not okay. That's not accurate at all.

They have equity, they can finally see over the darn fence, because they finally have enough boxes to stand on it. It is not an advantage, they have finally achieved equity. And so many disability accommodations are essentially that. It's an accommodation that finally allows the disabled individual to achieve some semblance of equity. That's all, it is not an advantage, it is not a luxury.

That gets lost in translation a lot. Because, if that six foot tall person looks to the right and sees the four foot tall person with two boxes and feels jealous, that is not the four-foot tall person's responsibility.

The six foot tall person has some work to do to understand that the shorter person has a right to those two boxes to be able to see over the fence.

Yes, the fence needs to come down, there's no question there. (laughs) But we live in an imperfect world with a lot of systemic access issues right now.

For those of you watching this, if you have other examples or stories, please share them down in the comments.

Reason number two, ableism.

This is an extension of what I've already been talking about. Ableism is the discrimination in favor of able bodied neurotypical and mentally healthy people.

It's essentially that six foot tall person looking at the shorter person with two boxes, and thinking that the shorter person is lucky, and thinking that that shorter person should not have any boxes, because they, as a tall person do not have any. That is ableism. That is not okay.

It is deeply harmful. Disabled individuals have a right to their accommodations, have a right to their modifications. So, that way they can access things that able bodied and neurotypical people have access to. That's it, end of story.

The audacity of an able bodied, neurotypical, mentally healthy individual to look at a disabled or neurodivergent, or mentally unhealthy individual who needs help and support, who needs accommodations, who needs modifications to see them getting those things that they rightfully deserve and need, to look at them and say, "You're so lazy. You're so spoiled." The audacity of that person, that is so ableist, and it is not okay.

It is a form of gaslighting to tell a disabled person that they don't need their accommodation, that they don't deserve their accommodation, that is gaslighting, and that is harmful and not okay. I know that with this video (and blog), I am not going to convince any ableist people to not be ableist.

That is not the point of this.

This video (and blog) is done in solidarity with those of you out there who are like me, and like those of my wonderful muses in my program that are treated horrendously by ableist, able bodied, neurotypical people.

You don't deserve to be treated that way. You deserve validation. You deserve help. You deserve support. You deserve accommodations.

Ableism is one of the worst things out there for us, spoonies. I might say this one more than once.

Number three, it is not your responsibility to suffer.

It is not your responsibility to martyr yourself. It's not your responsibility to suffer.

I've been chronically ill and disabled since I was 14 years old. While one of my conditions is genetic, and therefore I've had since I was born, I didn't really experience disability until I was 14.

Coming up on the 22-year anniversary in a couple of months, actually.

Along with that, like I've shared before, I have complex PTSD. A lot of childhood trauma that is separate from my medical trauma.

One of the stories, and I don't know where this folktale came from, if anyone knows where this folk tale came from, or if it even exists at all, or if it's just something I made up in my head, please let me know down in the comments.

This is story of a child that was locked in a dark closet to suffer alone, so that the rest of the world could live in a utopia.

As long as that one little child suffered, the rest of the world could just be perfect and happy. But that one little child could never not be alone, could never not suffer. And it felt like that, I felt like that little kid, that that's what my childhood felt like to me a lot of the time.

From that mindset, disability seems like a just punishment for existing. If I must suffer for the world to go round and for others to be happy, of course, my suffering must increase. Of course, I must suffer in silence. Of course, I must suffer more.

How dare I consider accommodating myself? How dare I consider doing or changing anything to make anything easier for myself.

It's been a long road to undo that programming. Brainwash.exe is what we not so lovingly call it among my students and myself.

If you relate to that at all, I'm gonna repeat number three again.

It is not your responsibility to suffer. Accommodations, support, modifications, things you need to access and do the things you want and need to do to live your life, you deserve and need those accommodations and modifications, and all that support. End of story, there's nothing to be ashamed about. If someone thinks you're lazy, F them, (chuckles) end of story, I will come for them, just sic me on them, I will be there.

I am so done with the people that take it out on people who are already suffering so much.

You, as a disabled person, have just as much right to a good life as those who are able bodied, neurotypical, and mentally healthy. Don't let anyone convince you otherwise.

Clip this moment of me saying it, save it to your phone if you need to.

Because even if you never get to know me personally... And remember, you can always book a Zoom call with me. That's the thing. (laughs) Even if it feels weird, that is a thing. I will, I would say this to you again.

Just ask any of my clients, any of my students, you deserve a good life and I'm here to help. And I will tell you again and again, it's not easy, it's not simple, but that doesn't change the fact that you deserve a good life. And there are things, no matter how small, that are under your control. And we will find them, and we'll make something better.

Going off script now. (chuckles)

I recently added something to my private community inside my program, "The Action Navigator" called the Bat Signal. And it's just using the couch emoji, 🛋️, in the community support channel. And basically, it's what you can use, if you just need another human being to talk to.

And I put that in the hopes that my students would use it in those moments when they just can't handle being alone. But I was afraid. I was afraid that my students wouldn't rise to the occasion and show up for each other, because we're all really going through it right now with what's going on in the world, and we're all really outta spoons.

Holy cow, (chuckles) we're outta spoons.

But what I have seen, is not only the incredible vulnerability of those who are using the couch bat signal, the strength it takes to show up and be like, "Yeah, I need help right now," that's amazing. And oh, the way I look up to each and every one of my clients who has used that. But then, how every time someone has risen to the occasion, been like, "Yeah, I'm here for you. Let's go talk it out." I am just in awe.

I think, it was Mr. Rogers who said something along the lines of, "In dark times, look for the helpers."

Oh boy, we're in dark times. Aren't we? And I know my personal demons, my depression, I've been very easily triggered recently. My managing my trauma has been a lot harder to see such beautiful souls, rising up, and asking for help. And showing up and giving, it is so profound.

And so, I just wanted to share that if you're out there, and you feel like you're alone, and there's just this tsunami of hate all around you, you really aren't alone. You really aren't.

If you're up for it, comment below, and tell me about a time when you experienced discrimination for being disabled. And to contrast it, tell me about another time when you received the kindness, respect, and accommodations you rightfully deserve.

Reason number four.

Because you have less precious time, energy, ability, and capacity than someone who is able bodied.

How you choose to spend those things, is so important and meaningful. Here's a metaphorical example.

Someone who has $1 million won't think twice about spending $5. But someone who only has $5 to their name, spending those five bucks will be a big deal.

For you to not just survive, but live your life, you deserve as much control over how you spend your precious time, energy, ability, and capacity. Proper accommodations and support help you do this.

If we take the whole, the horrible, "We all have the same 24 hours in a day" bull crap that gets lobbied around by so many productivity experts. Its, I mean, it's not true.

Needing accommodations to free up your time and energy, is so profound, because it frees up your time and energy to do impactful, meaningful things. This work means the world to me, and I wouldn't be able to do it if I didn't prioritize accommodating myself. If I didn't really come to terms with the fact that I am very disabled.

I realize disability is a spectrum and I fall in a different location on it than others. And there are those who are logically more disabled than I am, but that doesn't make my need any less valid. I still need accommodations and support.

If you are disabled, you deserve accommodations. When you have less ability, capacity, time, and energy. When you don't have 24 hours in a day to spend like someone able bodied and neurotypical, you have metaphorically only five bucks to your name, so when you spend them, it means something.

When I spend my time and energy on something, it's important to me. When I spend my time and energy on someone, they're really important to me. That's the side that a lot of ableist people refuse to see. I wonder if they're scared to see it? Let me know your thoughts?

Number five, laziness doesn't exist.

(laughs) So, the entire premise of this video, six reasons why accommodations are not luxuries or advantages.

If someone says you are lazy, it's like that whole thing. It's like, "Oh, you're chronically ill, you get to stay at home all day. You're so lucky. You just get to be lazy." (hiss)

♪ No, no, no, no, no, no, no. ♪

Laziness is a moral judgment that people place on those whom they are afraid of for some reason or another. Or whom they dislike for some reason or another. Whom they are threatened by for some reason or another.

Like, I've done videos in the past. What I consider my first YouTube video this one, I talk about laziness is a coping mechanism, and it can be. The act of doing nothing is often a coping mechanism. You're not being lazy, you're coping with an experience.

But there are other things that could be going on. You could be having executive dysfunction. You could be struggling with trauma. There is so much that could be going on. A person is never lazy.

For example, if someone is malevolently or maliciously being inactive, even that is not lazy, that is abusive.

Laziness doesn't exist. Instead, the use of the word "Lazy," all it ever does is it tells you something about the person using the word. If the person using the word is saying that about themselves, they're hurting, they're in pain, they deserve help. If you're calling yourself lazy, you are not lazy. I can guarantee, you are not lazy, there's something else going on, there is help to be had. And I'm here to help you if you want help from me.

If a person is calling someone else lazy, again, that is a reflection on the person using the word lazy, and has nothing to do with the person being called lazy.

Last, certainly not least, number six, lateral ableism.

This is a concept I very recently learned about, where plain old ableism is discrimination against the disabled by the abled. Lateral ableism is discrimination of the disabled by fellow disabled.

And it is often the most painful form of ableism, because it is coming from, in theory, the people who should understand the most. It really sucks. The people who should understand, who should truly empathize, are the ones that are causing the most pain, and it's not okay.

Just because you're disabled, you experience disability somewhere on the disability spectrum, does not mean you have infinite knowledge and experience of the entire disability spectrum. There are so many things that can go wrong with the human body. So, many things, it's alarming to think about. (overwhelmed and derisive laugh) And there are so many different experiences one can have medically on this planet.

Depending on what country you live in, what part of that country you live in. Depending on what race you are, what gender you are, what sexual expression you are, what body size you are, what religion you... It doesn't end. If you are marginalized in any way, shape, or form, in addition to the marginalization of disability, the way you experience the medical system, (exasperated hiss) to gaslight a fellow disabled person, to be ableist towards a fellow disabled person, is fucked up, and not okay.

And to return to that metaphor with the boxes, 'cause I was talking about earlier, the six foot tall person with no box looking over, at the four foot tall person with two boxes being like, "Wow, they don't deserve two boxes. That's not cool, I don't have any boxes." Lateral ableism would be, that five foot tall person in the middle with one box looking at the person with two boxes, and being like, "They have one more box than me, That's not cool, that's not fair." When the person with one box only needs one box, that's lateral ableism.

Disability accommodations are not the same as advantages or luxuries. End of story. (sighs)

And let me get one thing straight. It is deeply unjust that we are systemically stigmatized and oppressed. We deserve better. Those who are privileged, who are able bodied, neurotypical, and mentally healthy should be using that privilege to stand up for us in other marginalized groups.

To those of you who are, thank you.

But for the most part, they simply are not. And we are left to fend for ourselves not only to survive as individuals, but to make progress in improving our communities. It sucks. It really, really sucks.

Thank you for watching. If you're curious about what I do. I'm a productivity expert and life coach for neurospicy spoonies. And the main way I work with people, is through my signature course, "The Action Navigator". It's packed to the brim with tools and techniques for mastering your time, getting organized, and offering yourself radical compassion as a neurospicy spoonie.

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If that sounds like exactly what you've been looking for, use the link in the description box below to learn more. Check out this video next to learn why telling yourself this should be easy, can be the same as gaslighting yourself.

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See you then. Bye!