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Your weekly dose of information that keeps you up to date on the latest developments in the field of technology designed to assist people with disabilities and special needs.
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Amy on Twitter – @frocine
Website: www.insilc.org
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Amy Allen Sekhar:
Hi, I’m Amy Allen Sekhar. I’m the director of Community Education and Training at the Indiana Statewide Independent Living Council, that’s INSILC. And this is your Assistive Technology Update.
Josh Anderson:
Hello, and welcome to your Assistive Technology Update. The weekly dose of information that keeps you up to date on the latest developments in the field of technology, designed to assist individuals with disabilities and special needs. I’m your host, Josh Anderson with INDATA Project at Easterseals, Crossroads in beautiful Indianapolis, Indiana. Welcome to episode 432 of Assistive Technology Update. It’s scheduled to be released on September 6th, 2019. On today’s show. We’re very excited to have Amy Allen Sekhar on and you know what? Let’s go ahead and just get into the interview.
Josh Anderson:
On today’s show. We’re going to take a little break from technology and talk a little bit more about how we interact with others. It’s very important to treat everyone with respect and kindness, and occasionally we could probably all use a little refresher on that subject, including yours truly. Our guest today is Amy Allen Sekhar, and she’s the director of Community Education and Training for the Indiana Statewide, Independent Living Council. And she’s been kind enough to come into the studio and talk with us about this and some other subjects. Amy, welcome to the show.
Amy Allen Sekhar:
Thank you.
Josh Anderson:
Well, Amy, before we get into talking about everything today, can you tell our listeners a little bit about yourself?
Amy Allen Sekhar:
Yeah, so I have been formally a disability advocate for the past three years with INSILC, but in my former life was a French professor at the University of Indianapolis.
Josh Anderson:
Really?
Amy Allen Sekhar:
Yes, for 10 years. And I have my PhD in French literature from Boston university. So, I’m originally from Colorado. And so Indiana is very different. And I guess my favorite pastime, which I’m going to do right after this is adaptive or Para-rowing.
Josh Anderson:
We may have to have you on the show again to hear more about adaptive rowing because that sounds very cool.
Amy Allen Sekhar:
I would be glad to and I can round up some other folks too.
Josh Anderson:
That would be really cool. And I must admit, and this has nothing to do with the show, but you did the opposite of what most folks I know. I’ve never been to Colorado because I’ve always had things I had to come back for. And every friend I’ve had who’s visited Colorado has either come back for their stuff or realized they didn’t want it anymore and stayed. So you did the opposite.
Amy Allen Sekhar:
I did. But that’s what happens when you’re looking for an academic job. There are few and far between, especially in French literature. So you take what you get, especially if you have a disability, unfortunately. And so you move to Indiana for the job and it’s a low cost of living so I can, visit.
Josh Anderson:
I totally get it. No, I’m not going on to Indiana. I absolutely promise. But yeah, I guess with French literature that does probably limit your options just a little bit.
Amy Allen Sekhar:
Which I didn’t even do in the long run anyway. But that’s okay.
Josh Anderson:
Very few people do end up doing what they do. I think if you talk to anyone in the [IT 00:03:09] field, very few of us are rehab engineers or went to school for anything like that. Well, Amy, let’s get into what I really wanted to talk about today. So how we talk with folks is very important. So can you start off by telling our listeners a little bit about people-first and identity-first language?
Amy Allen Sekhar:
Right. So people-first language or person-first language, same thing is what I think a lot of people are taught in school as the polite way to talk about disability. So a person with a disability, a person with autism, a person with dwarfism. I have dwarfism. Identity-first language is using the more adjectival form. So a disabled person, an autistic person.
Amy Allen Sekhar:
The reason that a lot of people use person-first language or have been taught to use person-first language is because you want to put the person first and the disability second. The notion behind identity-first language is that that disability, is an integral part of that person and it’s an adjective like any other. And we want to reclaim the word disability because we are disabled by society and social structures.
Josh Anderson:
So, I think you led into this. Are you seeing some of those old terms being reclaimed and showing up? I know I saw #CripTheVote and it used to be. That was the word, I had to make sure it wasn’t the gang that I used to hear about in the ’80s.
Amy Allen Sekhar:
There has been a lot of move towards reclaiming terms and crip is certainly one of them. I myself use crip or cripple a lot. There are some people from a little older generation who have definitely had that term used against them and don’t necessarily want to reclaim it. Some folks use gimp, gimpy. I’m trying to think of any others that aren’t coming to my head right now. But even the word disabled. There was a move obviously away from the term, handicapped awhile back.
Amy Allen Sekhar:
And then people started using person with a disability or people with disabilities, but there has been a strong move back towards disabled saying, “I’m going to claim it. Disability isn’t a bad word.” There is a T-shirt roaming around there that says, “Disability isn’t a dirty word.” I think is what the T-shirt says. And Lawrence Carter-Long, who’s a disability activists came up with the hashtag in 2016, #SayTheWord, referring to disability and disabled. And I myself invented a word.
Josh Anderson:
Really?
Amy Allen Sekhar:
Yes. Well, I don’t think it’s gained traction yet. But everyone out there start using this hashtag. I combined Crip and hipster. It’s cripster. I’m a cripster. I want that, So it’s going to be on my rowing boat, is the word cripster.
Josh Anderson:
Oh, I love it. I love it.
Amy Allen Sekhar:
But I’m an old school hipster.
Josh Anderson:
Oh, I got you. So, by reclaiming those words, it takes away some of the stigma? Is that…
Amy Allen Sekhar:
Yeah, it takes away some of the stigma. And I think it also takes the power away from the word that has been used against you. And I think there are some terms that have a critical mass of people that you can reclaim that language. So, we’ve seen in the LGBTQ community, a reclaiming of the word queer, but I think it takes a certain number of people to be able to reuse that word. But also you want to make sure that people in that community can use that word. So I can say crip, cripple. Someone outside of that community not so much.
Amy Allen Sekhar:
So also again, I have dwarfism. I use the word dwarf to talk about myself, that’s a completely fine word. Little person fine. Midget, not fine, never fine. Don’t think that word’s going to be reclaimed at anytime soon.
Josh Anderson:
That one’s not coming back anytime.
Amy Allen Sekhar:
No.
Josh Anderson:
But that’s good to know. Amy, as we’re talking about isms, just because you brought them up. What’s ableism.
Amy Allen Sekhar:
That is a huge concept to define in a small amount of time, but I will give it a go. I would say that it is a way of treating or discriminating against people with disabilities, through behaviors and policies and institutions. Generally, I would say consider people with disabilities as less than, or inferior or less capable than people without disabilities or the abled as we call them on Twitter.
Josh Anderson:
We’re taking that word back. No, I’m kidding. I’m kidding.
Amy Allen Sekhar:
You can’t have it.
Josh Anderson:
So give me some examples of ableism or things that would be labeled as ableism.
Amy Allen Sekhar:
Well on the macro level, so they’re really large social structures. I think one of the biggest things that you can give an indication of is people assume that we’re incapable of making decisions or leading our own lives in general. So, society tends to make decisions for us. And I would say this plays out in lots of ways, but we can see it early on in educational systems that were not necessarily allowed or permitted or taught to make the same decisions that our peers without disabilities are made.
Amy Allen Sekhar:
And that’s reinforced through the way teachers treat us, the systems treat us, and I think going back to the language bit, a lot of people in the field are taught person-first language, but I’ve encountered a lot of people with disabilities, and it’s happened to me too, who I use identity-first language to talk about myself all the time and I’ll use crip, but I’ve been corrected by people in the field who are not disabled, but who will correct me about my own language usage about myself.
Josh Anderson:
Really?
Amy Allen Sekhar:
Yes. And I think that’s that thing, you don’t know better about how to talk about yourself, don’t. And there’s that assumption that we just don’t know, we’re not capable of making those types of decisions. So that’s where I always tell able-bodied folks, start with the person-first language. That’s fine. Sometimes people will say, I prefer identity-first language. I prefer you to use that about me, but never correct the person using the language they choose to define themselves.
Amy Allen Sekhar:
So I think there’s that. That’s a really general notion of ableism, is that people are assuming we’re incapable of directing our own lives. And even sometimes that comes down to language and jobs. And if we’re talking about the macro. The micro and what we call microaggressions are a nice example that I get all the time, is how nice it is that I came out in the world. They’re like, “Oh, it’s so nice that you came out today.” And I was like, “Well, I did have to go to the grocery stores though.”
Josh Anderson:
How brave of you to come out [crosstalk 00:10:36].
Amy Allen Sekhar:
Yes, I am a very brave individual for going to the grocery store, for driving. Just that presumption of incompetence, that plays out in little and big ways is I guess a quick and dirty way of describing ableism.
Josh Anderson:
And I know I’ve run into that a lot just being out in the community with individuals I’m working with and stuff and yeah, I know you think you’re being nice, but you’re being a jerk. Just because someone has a different kind of ability doesn’t necessarily mean they can’t do anything.
Amy Allen Sekhar:
Yes.
Josh Anderson:
Or that everything’s hard and this giant thing. It’s like, no. Yeah, just pick it up. Another thing is socks. Not a really big deal.
Amy Allen Sekhar:
The time that it just got to me, it’s not the first time something like this has happened, but this time, for some reason, it just really got to me. I was at one of those paint your own pottery places. And I was painting my terrible pottery. And this person came up to me and just was like, “Oh, you’re just doing such a fantastic job.” Really patronizing. ,And I was like, “Well, I hope I can do a little bit. I’m…. Well then I was in my 30s, now I’m in my 40s, but I was like, “I’m in my 30s, I hope that I can do this.” And she was like, “Really?” And I said… She said, “I don’t believe that you’re 30.” And I was like, “Wow, I know I’m short, but honestly.” And I said, “I can show you my driver’s license if you really want to see how old I am.” She said, “You can drive?” And I was like, “Yes. And this is my husband. And I’m allowed to be married and have a regular life and a job.”
Amy Allen Sekhar:
And it’s just those types of attitudes that are pervasive. And it seems like it’s just a one off, but that happens all the time. People take my photo. I’m so beautiful.
Josh Anderson:
And Amy, you brought up a really good point in there about being involved in the process of things. Somebody we talked to a few weeks ago, talked about you’re doing something for people and you really should be doing stuff with people. And I get it a lot with questions from funding sources and other folks, “Well, my son has this. What is their forum?” I don’t know because everyone with this, is completely different people. That’s all they have in common, everything. There are probably some barriers there that there’s some things they can help with, but what he needs might be three times as much as what this person needs or half as much.
Josh Anderson:
I don’t know. I have to meet them, talk to them, see what they need. And it’s always funny, but you brought that up in there. So how can we help to end or curb ableism?
Amy Allen Sekhar:
Well-
Josh Anderson:
Probably in our own lives. Trying to change the world’s a big thing. Let’s go with one on one. How can we do it in our personal lives? We find ourselves maybe being guilty of this.
Amy Allen Sekhar:
It sounds simple, but I think one of the best places to start is with language, which is why we’re here today. Because I think we underestimate the power of language to send messages to and about people. And of course, as a language person, I think that’s really important. So one of the things that I really, myself am working on is just eliminating some problematic language from my vocabulary. We all know about the R word. We’re not going to use that one, but even just words like crazy and insane. Those are words that… We have better words to say what we’re wanting to say and when we use those words to dismiss something, we’re reinforcing this idea that people with mental health issues are less than or less capable of doing particular things.
Amy Allen Sekhar:
So really evaluating the kind of everyday language that we have. And I have resources. I don’t know if you can put them on your webpage about some common language that is abelist. I think that’s a good place to start, but I really think another thing is listening to disabled voices and actually letting us lead the conversation and the directions and what we consider abelist.
Amy Allen Sekhar:
I don’t know how many times on Twitter. Disability, Twitter, I’ve gotten into arguments or I’ve seen other activists get into arguments with able-bodied people who dismiss our experiences. And so, I think that’s essential that you really start from that place of belief.
Amy Allen Sekhar:
Any marginalized community is fighting that stigma, so you need to believe that their experience is what they say it is. So an LGBTQ person, if they’re saying they’ve experienced homophobia or transphobia, you believe them. Same with racism. You believe them, you start from that place. And I think you can only start from that place if you’re listening to those voices.
Amy Allen Sekhar:
And I think for disability, because for so long other people have been speaking for us, people aren’t used to us having a voice. And I think that’s a little unique in our community and that a lot of the birth of our disability rights movement was started not necessarily by us and with the disability rights movement in the ’60s. Of course, we were like, “No, this is nothing about us without us. We’re doing this.” But I still think people don’t necessarily, aren’t ready for that. So one of the best things you can do is get on Twitter, get on Facebook, read blogs, watch videos by people with disabilities or disabled voices. Yeah.
Josh Anderson:
Amy, tell our listeners about spoon theory.
Amy Allen Sekhar:
All right. So I love spoon theory. Spoon theory is a theory developed specifically to talk about chronic illness and chronic pain, but I think it applies to a lot of types of disability. So it’s a way of helping people who don’t have limited energy to explain how our day and how we experience different obstacles throughout our day.
Amy Allen Sekhar:
So, the idea is that say everybody starts their day with 30 spoons. You can just throw a number out there and it takes able-bodied people, a specific amount of spoons to do different activities. And even within the disability community or different experiences of disability, it takes different people, different amount of spoons to do something. So for me, for example, before I got my wheelchair van with a lift on it, it took me about three spoons to get into my car. Whereas an average person who would take one spoon.
Amy Allen Sekhar:
It doesn’t take me any more spoons to read a document or watch or listen anything, because I don’t have communication barriers, but for somebody who’s deaf who might have to spend time reading lips or accessing information through an interpreter, it takes them more spoons to get through a meeting than it would me. So the idea is that we run out of spoons a little more quickly than the average person. And so part of that is when for me, it’s the end of the day. I definitely, by the end of the day, not many spoons left, or if I’ve had a particularly trying set of things or have had to do a lot of things that take a lot of spoons, I would say, “I don’t have the spoons to do that. I’m out of spoons.”
Amy Allen Sekhar:
And so we throw that around, or that takes too many spoons. And I think a lot of disabled people have different amount of spoons that different activities take. But I think the common thing is that we all have to make decisions about our activities of daily living or even social activities based on how many spoons we have left. And I think that’s why things like assistive technology, see, I’m a pro I’m just going to bring it right back down.
Amy Allen Sekhar:
Things like assistive technology and accommodations are so important because if it normally takes me five spoons to do something without accommodations, and we can get that down to one or two spoons, then look at how many more spoons I have to do social activities and to be out in the community.
Amy Allen Sekhar:
Same thing like I was talking about with my car before I got my new driving setup, I hated driving. It was painful getting in and out. It was painful driving. And now I’ll drive to rowing once a week from Richmond, which is 80 miles away, because it’s not painful and I have the spoons to row now. So it’s a language that we’ve adopted to really talk about energy consumption and energy use. And that’s why assistive technology is so important.
Josh Anderson:
Amy, tell us a little bit about disability allyship and what’s a disability ally?
Amy Allen Sekhar:
Right. So allyship in general, is a big notion, but it’s something that, and you mentioned this before. Instead of speaking for someone you want to speak with someone or walk along with them in that path and really let them take the lead. And one of the most important aspects of allyship is that as an ally, you don’t get to claim that you are an ally.
Amy Allen Sekhar:
It’s up to the people in that community to claim you as an ally. So, I don’t get to say I’m an ally to the LGBTQ community, they get to say that. I don’t get to say I’m an ally to the Black community, they get to say that if my deeds and actions are worthy of allyship. Now I’ve been doing a lot of work on my own to support those communities but same thing with disability, if the community sees you as an ally and sees that you’ve been elevating voices of people with disabilities and actually letting us lead the charge, then we’ll probably claim you as an ally.
Amy Allen Sekhar:
So I think one aspect is you don’t get to claim it, the community claims you as an ally. And one of the best and most important things you can do as an ally is to make sure that disabled voices are being elevated and empowered. And I think that’s a really important thing, is the empowerment piece that we are the leaders in conversations and not just in what people consider a disabled space. All spaces are disability spaces, right?
Amy Allen Sekhar:
So whenever you’re in a space, are there disabled folks in the room? If not, how do you get them in the room and how do you give them a voice in that room? So your job as an ally is to see who’s absent from conversations and to get them into that conversation. Open the door, get out of the way. Right? So that’s really easy, quick explanation of allyship, which I could talk about for hours on it.
Josh Anderson:
Well, we’re going to have to have you back on it, probably in all this a little bit deeper, because I-
Amy Allen Sekhar:
Give me my own podcast already.
Josh Anderson:
You know what, I don’t know, I need vacation sometimes. So be careful what you wish for every once in a while, Amy. Amy, as we’re winding down here, I did want to ask you about Advocates in Action, because I want to talk about one more thing that you could fill an entire show with and try to filter it into a few minutes, but tell me about Advocates in Action.
Amy Allen Sekhar:
So Advocates In Action is a pilot advocacy program that INSILC or the Indiana Statewide Independent Living Council is, we’re in the midst of doing it right now. Our session three is going to be next week. So, it is an advanced advocacy program. And the unique part of it is that it is only for people with disabilities and it’s by people with disabilities.
Amy Allen Sekhar:
So, we have 15 advocates who are going through a rigorous five-month process. So we meet once a month, two days for five months and the 15 folks who are advocates have various disabilities. So we’re talking cross disability, not just physical, but intellectual and developmental disabilities. We have blind, deaf, low vision, every kind of, run the gamut of what you can think of. But the other important aspect is that every speaker or facilitator that we have, also has a disability and they’re at the national level.
Amy Allen Sekhar:
So we’re having folks come out this coming session, who both worked under the Obama administration on disability. So there were working on the policy [inaudible 00:24:05] of things. So for us, it’s about again, letting disabled people lead the charge and what disability policy looks like in Indiana and letting us shape that conversation and really creating this, what we like to call an army of advocates.
Amy Allen Sekhar:
The idea is that as this program hopefully continues, it’s out of its pilot and continues in the future. That we’ll just end up with more and more advocates that we can just call on to really be the voice for disability in Indiana, to really determine the way forward instead of letting groups who might represent disability, but who might not be disabled lead the charge. We want to lead the charge. We’re happy for the allyship, but we want to determine the direction things go and then be supported as we move forward.
Josh Anderson:
Oh, then that makes a lot more sense because what people might think you need, isn’t always what you need.
Amy Allen Sekhar:
Precisely.
Josh Anderson:
It works that way. Amy, it has been an absolute pleasure having you on the show today. If folks listening want to find out more about you, how would they look you up?
Amy Allen Sekhar:
Well, if you’re on Twitter, I am on Twitter. My handle is @frocine, that’s F-R-O-C-I-N-E. Just a quick story. That is the name of an evil dwarf from Medieval literature. So talk about reclaiming terms.
Josh Anderson:
Now, is that French Medieval literature?
Amy Allen Sekhar:
It is.
Josh Anderson:
Okay, good. Good.
Amy Allen Sekhar:
It was actually a male dwarf and his name was [Frocen 00:25:40], but I made it frocine because that’s what I [inaudible 00:25:42].
Josh Anderson:
I think you’re allowed that [inaudible 00:25:44]. You’re going to claim that you’re allowed that [inaudible 00:00:25:46].
Amy Allen Sekhar:
So that’s probably where I’m the most vocal, is on Twitter. You can also head to INSILC, which is www.insilc.org. And I think that’s how you can probably stalk me there.
Josh Anderson:
Sounds good. Well, we’re going to stalk to you a little bit and probably have you back on the show to talk about all this stuff a little bit more in depth because I threw a lot of questions at you and I know you wanted more time to answer those, so we’ll make sure to have you back on, but Amy, thanks again for coming on the show today.
Amy Allen Sekhar:
Thank you.
Josh Anderson:
Do you have a question about assistive technology? Do you have a suggestion for someone we should interview on assistive technology update? If you do call our listener line at (317) 721-7124. Shoot us a note on Twitter at Indiana project or check us out on Facebook. Are you looking for a transcript or show notes? Head on over to our website at www.eastersealstech.com. Assistive Technology Update is a proud member of the accessibility channel. For more shows like this, plus so much more head over to Accessibility channel.com. The views expressed by our guests are not necessarily that of this host or the INDATA project. This has been your Assistive Technology Update with Josh Anderson with the end data project at Easterseals, Crossroads in Indianapolis, Indiana. Thank you so much for listening and we’ll see you next time.
