Transcript of “Rights Here, Rights Now - Episode 2: What is a disability?” produced by the disAbility Law Center of Virginia. The information provided on this podcast does not, and is not intended to, constitute legal advice. Instead, all information, content, and materials available are for general informational purposes only. Welcome to Rights Here, Rights Now, the podcast about disability, advocacy, and activism. [REN]: I’m your advocate host, Ren Faszewski. And I’m your advocate host, Virginia Pharis. Every two weeks, we dig into relevant issues, current events, and avenues for self-advocacy. [REN]: ‘Cause someone has to! [REN & VIRGINIA]: It might as well be us! [VIRGINIA]: So today we’re going to be talking about a pretty broad topic… [REN]: Yeah! [REN]: What is disability? [VIRGINIA]: And…um... to explore that topic, we have in the studio with us today our wonderful um, colleague Mr. Robert Gray. And he will help us explore what disability is, maybe some different definitions, what it means to even have a disability… Yeah. A little bit of disability etiquette…but before that, let’s jump into, disability in the news. According to Disability Scoop, a new report found that there are more characters with disabilities set to appear on Primetime television this season than ever before. Though representation still falls far short of mirroring reality. Among the 879 characters expected on broadcast programming during the 2019-2020 season, 3.! % or 27 characters, have disabilities. The numbers come from an analysis this month released from GLAAD, a media advocacy organization for the gay and lesbian community. The percentage of characters with disabilities is the highest found in the decade, that GLAAD has tracked disability representation on television. And it’s a full percentage point above the 2.1% recorded last year. Find out more at Disability Scoop.com. We are hopping into our main topic today which is, ‘What is a disability?’ Sitting here with DLCV staff Robert Gray and waiting to find out ‘What is a disability?’ [VIRGINIA & REN]: Hi Robert! [ROBERT]: Good morning, everyone. [REN]: How ya doing?” [ROBERT]: I’m well. Y’all doing all right? [REN]: We’re doing all right. Are you excited to…educate us? [ROBERT]: I am but you know what in order to understand disability, you first have to understand the law that kind of embraces and defines what disability is. [VIRGINIA]: Laws? I don’t know why the disability law center has anything to do with laws! [ROBERT]: Yeah we stuck that word law in there just to kind of…fill it in and make it make sense, um, but..there is a law called the Americans with Disabilities Act. And it is federal law, which defines what disability is and it defines disability as a physical or mental impairment that substantially limits one or more major life activities. And that’s a lot of words. [REN]: That’s a lot of words! A lot of long, complicated words. Yes… [ROBERT]: Mmmhhhm…so in order to kind of get past those words what we do is we embrace people who define themselves as having a disability and serve that population. Based upon the information we receive from them. And so, in order to assist people, we have a number of different ways to do it. [VIRGINIA]: Okay, so it sounds like we really do try and focus on this “person-centeredness” of disability. You know..if people define themselves as disabled they can call us and..and talk to us about their situation, without us having giant hoops for them to jump through before they can talk to somebody.. [ROBERT]: That’s exactly right. Um, because if you may think of somebody they may have an injury for example, say they hurt there leg and like, “Oh I just..you know, sprained my knee…” You know that’s not a disability. But what if that sprain leads to something more chronic. And all of a sudden they realize for the rest of their life they develop a gait and then they find themselves using a cane. They find themselves with some type of physical problem, and ‘BOOM’ they all of a sudden have a disability and might not even realize it. [REN]: So, along that line, what types of disability could there be?-Sure- We kind of mentioned the chronic injury that sort of leads to disability issues. Is there a way to sort of categorize disabilities? [ROBERT]: You can um, generally, you have people with physical issues, um, so they might find themselves in a situation where they’re possibly an amputee. Maybe they’re missing..uh a limb, and so they’re using some type of equipment, uhh like a wheelchair or some other device in order to move, and what we call sometimes ambulate, that means to move. Umm…Also, we’ve got people with issues when it comes to their mental health. They might have some concerns and a lot of those types of disabilities are hidden. And you don’t necessarily see them. And it’s easy to…these folks become lost in the weeds sometimes because we don’t realize, you know, that they’re also having some concerns and issues and we can take that for granted. [REN]: Is there a way that disability law center as a PNA sort of figures out…who to help when, or where we can go, or what kind of people we can assist,… [ROBERT]: Yeah, we kind of do the best we can to streamline those processes. And so, what we do is we have what’s called a, uh, um, a system where we have what’s called an information referral specialist who is available to take in requests that come in from the public. And that individual is kind of our hub if you will to talk with anyone that might have a problem. Um, and they can reach out to us through a phone call, through an email, or through any other means of communication that’s effective and works for them. [REN]: And like you said earlier, again, like, you don’t have to jump through any hoops to make that…make that call. [VIRGINIA]: Right, and I think there are a lot of circumstances you would agree, where the person calling us isn’t necessarily the person with the disability. People call us all the time to alert us to situations… Um, to ask for information…and just the, the thing to keep in mind there is that for DLCV is the person who has the disability is always going to be, um, the priority…is always gonna be the person that we’re working for. [ROBERT]: Absolutely, you hit the nail on the head, Virginia, because, uh, we have to understand that. We’re a client centered agency and client-directed and we give the power of the person who’s making the complaint or expressing the issue the most power when it comes to explaining what they want. Um, it’s not necessarily- it’s never about what another party’s interests may be it’s about what is best for that individual and no one knows that better than the person who’s making the complaint. [REN]: So there’s all types of disabilities obviously we’ve mentioned some physical disabilities. I’m also thinking…you know, blindness, deafness, um, those kinds of things count. We’ve talked about mental health and mental illness. Um, then, uh, there’s other neurological disabilities. Like, developmental disabilities…um- [ROBERT]: Sure [VIRGINIA]: Traumatic brain injury [REN]: Traumatic brain injury. So there’s all sorts of things that could be effecting people. Why does that even matter? [ROBERT]: Right, because, uh, a lot of the systems that are in place to support people with disabilities are very weak, and, or they’re inconsistent. And a good example of that would be um, our, our system in Virginia of our Medicaid waivers. Where, they’re designed to meet the certain needs of the developmental disability population. [REN]: Yep. [ROBERT]: And yet you’ve got a whole, massive, group of other people with all kinds of different disabilities that have no waiver. So, uh, Medicaid, uh money is spent on one population, and unfortunately, is not there to support many of the other populations. [REN]: So it sounds like healthcare could be a big issue. Um, for people with disabilities. [ROBERT]: Oh yeah, and it could be healthcare when it comes to benefits, or it also could be healthcare when it comes to access. If a person’s trying to like, get into a medical office. Um, a very important preop- pre-operation instructions about a procedure and then they need it in a specific format. And they don’t get it that way, and the doctor hands them a piece of paper they can’t read because they’re visually impaired. You’re completely destroying their ability to see the exact same service that anyone else would receive. [VIRGINIA]: And that’s not exclusive to medical care either. I mean, accessibility in all venues is, you know, something that people, especially if we have mobility impairments or vision impairments, um, just -we- have to deal with every day. [ROBERT]: That’s exactly right. I mean, we could go right across the street right now, right across the street from our office, you know, to the Kroger, and we might walk into that building and say there was a broken door. And it would only open, um, 30 inches. Um, you know, that’s not wide enough for any wheelchair, most wheelchairs to fit through. And so then you’ve created a barrier to service. Those are the types of things that we have to be mindful of because there’s barriers out there every day. And all of them are out there but many of them are not as obvious as we would think. [REN]: I know that, um, we-we-we’ve had past cases..I was just thinking about the medical appointments, um, where people who are deaf go to get medical appointments or any other service whether, their, you know, seeking out um, like, you know, I’m not even thinking like just a restaurant- [VIRGINIA]: Mmhhhm [REN]: -But you know, some sort of service that they’re trying to obtain and they don’t have an interpreter!- [ROBERT]: Mhhm [REN]: You know if they’re..they’re trying to- they use sign language as their primary method of communication and they’re trying to get a medical appointment and the office doesn’t provide an interpreter for them. Um, that can be a huge barrier, not only to getting even good medical service or good service, but even obtaining it in the first place- they might just be like, “Nope! Clearly this isn’t working out! I’m just going to put off whatever I need to put off!” [ROBERT]: And that’s the beautiful thing about the ADA..it gives all kinds of protections that Americans With Disabilities Act allows people to receive the information they receive-that they receive- in a way that they can understand it. And the way that it has absolutely clean (hmm) and clearly- it’s, it’s plainly in front of them just like if anyone else who might be sighted or who could hear, or who had any other type of issue when it came to, sensory or physical. [VIRGINIA]: Yeah, and uh, communication doesn’t just extend to having a conversation real time, I mean, that’s also going to extend to, um, written materials, like, um- [ROBERT]: Mhhm [VIRGINIA]: -Stuff in Braille for people with vision impairments. R&Re: Mhhmm [REN]: Um, other areas where disability can make an impact or impact someone’s life are, um..What about, uh, education? [ROBERT]: Yeah, education’s a great example. Um, as you know, children, when they’re in school, they-they have to be served, equally, again just as if anyone else if they have a disability. Regardless of what issues and concerns they may have with their barriers to education. So they may have So they may, they might need something such as a, like, a closed caption television for example that could actually have the words put up, for what the teacher is- is presenting to the class. Children in school might also have problems when it comes to being failed for- for behavior outburts and his behavior off first may be related to their disability. Something we find very is a very frequent problem a DLCV; we get that all the time and so how can these children be accommodated. Do they need things to relieve stress, like a stress ball, or a room they can go to to deescalate. [VIRGINIA]: I can imagine that person with a disability ages that extending into work the workplace-like, disability in the workplace? [ROBERT]: So you got me excited over here, Virginia! We find that these things absolutely bleed over. And so what you have is just someone who needed a communication board, and in high school you know-that-you know you don't all of a sudden regain their speech. In most cases, when they start to go out into the world and try to find a job, it’s- they still need that communication board and they still need to be allowed to use it on the job site. They need an accommodation/accomodations. They might be able to lift something just fine if they have a specific support..something like device brace on their back, or, they might have to have a grab bar in their hand in order to reach something for much higher! And that's okay. They don't always have to perform the tasks in the same way as everyone else but they do have to be-they do need to be able to perform the essential functions of that job. And that’s why there are agencies out there like Virginia and the Department for Aging and Rehabilitative services and, Ren, like the Department for Blind and Vision-impaired and those are rehabilitation services providers. [VIRGINIA]: And Robert I think we're going to have you back on the later episodes to talk a little bit more about, uh, workspace and disability, um because I know that there are going to be… [REN]: We’ll do a deeper dive, later on the way he's just there's so much more to come because thinking even-even….> [REN]: With workplace accommodations the one that you're mentioning… the one that you mentioned I think that you know not that into these are almost like obviously not like a pretty you know you know using stand up desks or Organomic devices! Where, you know, you might not know if there's some sort of chronic pain issue were things like that… those are absolutely part of that discussion. [ROBERT]: Absolutely part of that it's a really good point You know we we receive calls, a lot of times about allergies and people who are, you know- there someone in the workplace, and maybe he's wearing a strong cologne or perfume, and you know, and everyone around them might be- their co-workers might actually be making light, of them and making fun of them, because they're- they're complaining about the smell, but inside of their head they're having a pounding headache from the out the allergy and the effect of the allergy. So, it's very easy to overlook these very specific accommodations based on a person's needs. [REN]: It sounds like..that…disability can really impact life in a bunch of different ways. [ROBERT]: It's true and a lot of what we do at our office would we do provide Case Services as you know, and…. but a lot of information referral too. So folks that come to us they might have an issue or concern but we empower people by making sure they understand they can be their own best Advocate! [VIRGINIA]: Sure. [ROBERT]: And…and that you know we’re a great resource but we come and we go and they need to understand that at the end of the day how can they be in power to resolve their conflict or their/that issue themselves and with, their, of course, their network of support from their friends and family. [VIRGINIA]: …..Yeah, there are the types of services we provide DLC V operates under several federal grants…. and those grants are… is sometimes determined on what the services that were actually providing are sometimes it is dependent on what the issue it it is and sometimes it has more to do with the type of disability itself, um. [ROBERT]: Exactly exactly! You know Virginia that that's where it gets a little bit complicated for us because we have a bunch of federal partners that will allow us to receive this money but like you said it's in so many different ways we touched on a couple of them earlier when we talked about you mentioned traumatic brain injury traumatic brain injury is a perfect example. Traumatic brain injury is a force or blow to the head on caused by an external force that causes an individual to have what's known as a traumatic brain injury. We have a grant and it's very small but it allows us assist with people who are were and individuals who had traumatic brain injury and are facing an issue or problem. Where as someone might also have an acquired brain injury they might have a brain injury that came as a result of the closed injury such as a stroke and that would put them in a different category and so we would have to find some other way to serve them so we do have some other programs. Would you would you like for me to talk a little bit about those programs? [VIRGINIA]: Yeah! [ROBERT]: so we also have a program become a traumatic brain injury so that's an example of a program that is specific to a disability other programs that are specific to a disability. Another program that would- would be our developmental disabilities program or DD program and that involves people who are facing if you think somewhat the developmental disability lot times when I have this conversation with people they go to an extreme there's a- “well, you're talking about folks in group homes” and that's not always what a person with a developmental disability. It’s a person with a developmental disability that might be the person who is in a wheelchair because they had major surgery to their ankle and all the sudden they're unable to function here, and oh by the way, also they have an issue with continents where they’re [VIRGINIA]: and then oh, oh, but you know also there's a problem with their economic status and they could they have to rely upon things like public benefits!... [REN]: Exactly and then all the sudden we have three functional limitations and so these folks find themselves in this specific category it isn't it is a great broad category or to serve a lot of different people but it really does require like you said that diagnosis before age 22. [VIRGINIA]: Grants are weird, be patient with us if you're on the phone with us but also I mean it is a little strange that we have to put these do we have to put disabilities into boxes like this but it's sort of a necessary evil just to be able to get the funding to serve people we recognize that there is like a world of difference between the challenges that people with cerebral palsy face in person to beat the challenges that people with Autism can get that sort of under one umbrella Under the DD Grant [REN]: I think what's important is that even though the grant might have those definitions like the money is there so late again it's it's it's what we're able to we will be able to help with any specific issue that were able to help with whatever the definitions are on as important as long as you know we're able to really figure out what the issue is and what would be there with! [ROBERT]:That’s perfect, Ren, yeah you don't have to come into our office or call us on the phone and say I'm calling to apply for your DD program your developmental disabilities program just call in and we'll figure all that stuff out. [REN]: Okay, with defining disability is that there is you know it's really Is you know it's really important to be mindful of disability etiquette so when you're speaking with people with disabilities or about people with disabilities it's… it's good to be the good be aware of what is disability etiquette is because kind of based on some people with disabilities don't want to be put in specific boxes. You know, they define themselves, as you know, a certain way and it's important to be really respectful of how, of their own definitions of that of what they do with. [ROBERT]: Absolutely. You know, another one of our grants is the Assistive Technology grant that allows us to Technologies any, any piece of equipment that could be modified off the shelf but it's used to help a person with disability overcome a problem and so on assistive Technologies a perfect example of it is an extension of a person and so therefore if you have appropriate disability Advocate then you understand that you're not going to touch their devices you're not going to touch their wheelchair… and not to touch their cane.. not going to touch anything that is a part of them because it is literally just like their right hand. And so you know that's that's a great example of disability etiquette and some others examples might be… Sometimes we have a bad problem of referring to people with old dated a terminology right and- [REN & VIRGINIA]: [OH BOY!] in Virginia and individuals are used to receive a waiver years ago they used to call it the mental retardation waiver and I hate even saying the words because that that is that is no longer spoken and whenever anyone tries to go there I immediately cut them off. But but you know these are individuals with intellectual disabilities not individuals with that that other word I won't say again [REN]: Definitely-In my past when I was doing more field work as a clinician you could kind of tell that sort of line with people who have been in the field for quite some time vs. new new providers because you could get that a lot using the old terminology and having to you know still within yours with job be like well that's not the term we use anymore like that's not, you know that's not how we define this anymore! [VIRGINIA]: Unfortunately you know we still see a lot of state agencies like on some forms and on some like processes than they do like they haven't they haven't gotten with the times and you are out there and you have any power and you're working for state agency maybe maybe get on that takes a little! [ROBERT]: but you know a disability out of the most important thing that I feel like is out it needs to be put out there is we need to understand to give folks Dignity of risk and dignity of risk means that we're going to let people make choices and those choices aren't always going to be the best choices for what rather than choose to patronize them and to try to do things for them or talk to them like they're a child we're going to allow them if they want to go out and do things which are going to have consequences then we're going to allow that to happen! [REN]: Yeah there is there is this very is very Insidious attitude love this idea that like when someone who is at least on the surface cuz we can we don't necessarily know everybody by looking at them but there is as if they have a disability or not but on the surface do not have one and they're making really poor choices such as you know Ren in college making a series of poor choices you know we just say that a person is making poor choices but then someone with a disability might be making the same so it says again poor choices..consequences but we relate that choices to their disability like will they would it be making these voices but they're disabled yeah that's why these choices are being made and it is that really yeah like treating them like children like this very paternalistic like attitude of we have to coddle and help you make decisions for very gross reasons. [VIRGINIA]: You know just part and part of living in this world that is making the bad decisions and learning from it that's how I learned most of the things that I know. And I know everybody deserves to have that same experience. [ROBERT]: 100% percent and then we see this throughout all of our society and like to think we're moving in that direction with many different ways that we are evolving and accepting you look what you got outside of our building and you're going to see a handicap parking plaque sign the word handicap parking is ridiculous handicap this is not a word that should be used ever again. [VIRGINIA]: and will you refer to these parking spaces as disabled parking space in front or accessible park at school parking lot. [REN]: also sort of soft so so soft so like saying someone is wheelchair-bound right you know people may not realize that wheelchair-bound IQ because what it is is that it's a person who's using a wheelchair it is a device they use to be mobile and it's not the bound [VIRGINIA]: Bound like automatically places value judgments on their quality of life a wave that is certainly not preferred I think we'll go with that like you know what I say this is somebody with a disability I think most people who have disabilities like if you use the wrong term here and there were not going to like tie you to the steak and set you on fire, like, the most important thing is to make a sincere effort. [ROBERT]: That's right you know I'll tell you a funny story when I first started here DLCV many moons ago I was taking a call from someone on the phone from a facility and they kept talking about their wheelchair their wheelchair and I said is your chair a manual chair or is it an electric wheelchair and I didn't realize what I was trying to say is a power-driven wheelchair that use the word electric cuz I'm thinking okay electric electricity batteries and this person was very very upset because understanding that there were times in Facilities when many different terrible things were done individuals including treatment that shocked you. [REN & VIRGINIA]: [OH!] [ROBERT]: And at and so he went to that extreme I'm not in an electric chair that shocks me and and I immediately that was kind of where my first experiences with disability had to get my apologize. I'm so sorry let me let me take me to take back these words and let's let's walk let's talk through this so sometimes it is just a matter of listening to people and understanding what their preferences are. [VIRGINIA]: Some things might be comfortable to some people some people might be some things might be comfortable to others. I definitely know a lot of people who have disabilities who prefer person first language which is like saying a person with a disability and I also know a lot of people who you know for their own reasons prefer disability first language you know that disabled person so they define themselves that way. [REN]: I think it's important just to pay attention to the person you're talking to and whatever terminology they're using that's probably this conversation of disability of risk and dignity of risk is helping people because I really want to help our fellow man but does a person need your help with a person who want your help and there is no reason to in a disclaimer no reason to touch people in any circumstance without their permission but it's not okay to touch disable people without their permission because of long of the histories but also in Oregon their people and you need to treat him as such another example kind of thought about cuz we kind of talked about pushing the wheelchair is the service anima. You know you cannot pet someone service animal doesn't matter how cute that pepper is you cannot just that cuz that is a tool at that moment that they're using to get about their day and it's very disrespectful to to try to impede their life by being like- “Oh excuse me I'd really like to pet your dog!” [ROBERT]: Now it's it's it's important and all these things of removing these barriers and giving people all the breathing room they need to do their live their life like anybody else you know that's what we do when they call in when I call in you know you might have the best of intentions if your Aunt Jo living in Michigan who's calling it about her her her grandson that she's very concerned about and and she's worried that you know he's he's and he’s in facilities not getting the care he needs and we push it and shows concern but it's very conceivable that the person who lives in that facility might also be quite content and just because Aunt Joe wanted him to eat green beans and he chose to eat a pizza that is not okay that he's eating the pizza and so so just give people a choice you know winter veggies on that if they want to really want to. [REN]: I think that we've just cleared it out disability to answer any more questions we solved it I kind of want to plug it in one more time about calling in regarding information and referral. [ROBERT]: absolutely so don't hesitate to call us at any time or find us a through our website on dlcv.org or call us at 1 800-552-3962 and reach out to us it if you need to reach out to us in an another language you need to reach out to us through the relay service fee need to reach out to us there any type of alternate format just let us know. [REN]: And now for some dLCV highlights! DLCV highlights! 1. In this case study we will describe a scenario that involved one of our Advocates. We got a medical office to provide in-person interpretation for an individual who was deaf and communicates using American Sign Language. The medical office first tried to provide video remote interpretation (VRI) and did so for the first appointment. The appointment was a total disaster taking a long time, resulting in much frustration between doctor and patient, and leading to a long appointment. The video remote interpretation was choppy, unsteady, and had a poor image creating; difficult communication. As result of this, dLCV provided the medical office with the requirements under the ADA to provide for effective communication using VRI and pointed out that the use of VRI, in the previous appointment, did not meet the standards required by the regulations. As a result, the medical office provided an in-person interpretation for the second appointment. This appointment went quickly, smoothly, and everyone was happy at the conclusion. This is an important reminder that the ADA requirement for auxiliary AIDS and services requires that they provide effective communication. The ADA does not just require an interpreter. The interpreter must assure that the patient can communicate clearly with the doctor. All technology has great promise and ensuring effective communication for people who are deaf, sometimes there is no substitute for an old fashioned in person interpreter. There is no one-size-fits-all accommodation for effective communication and public accommodation, seeking to use VRI, must assure that they have a good steady internet connection to assure a steady image. And when an accommodation does not work, people with disabilities should ask for an accommodation that does work. And this has been your disability Law Center highlights. [REN]: So once again I really have to think Robert for coming out and taking the time to talk to us. [VIRGINIA]: Yeah, it's such a broad and complicated topic and we're going to get into a lot of these areas in Greater detail in the coming weeks so make sure that you stay tuned and subscribe, so you can listen to all of our podcast as they come out. [REN]: And thank you all for listening to this episode of Rights Here, Rights Now! Again, brought to you by the disAbility Law Center of Virginia. We’re available on Apple podcast, Spotify or wherever you get your podcast. Don’t forget to, as Virginia has already said, subscribe and maybe leave a review. [VIRGINIA]: And if you need assistance or what more information about dLCV and what we do, visit us online at dlcv.org. [REN]: You can also follow us on Twitter at disability law VA and share with your friends [VIRGINIA]: until next time I'm Virginia Pharis [REN]: and I'm Ren Faszewski and this has been… [VIRGINIA & REN]: RIGHTS HERE, RIGHTS NOW!