Tova: Welcome to this week’s Inclusion Revolutions. I am your host Tova Sherman, and I am very pleased you can join us on Eastlink TV for another interesting show, focused and dedicated to inclusion of persons with disabilities across our country, and certainly in our community. I am really pleased to have Peg Britton joining us today. Hi Peg and welcome.

Peg: Hi Tova. Thank you.

Tova: And the reason Peg is uh with us today is to talk about the issue of self-advocacy. I know we hear that word sort of thrown around quite a bit, but just for today’s purposes, self-advocacy is really being discussed as how an individual can advocate on their own behalf, or steps that individuals need to take, not just persons with disabilities, although I have found in my experience, persons with disabilities need to be excellent self-advocates. So, what we’re really excited to do is to talk to Peg, who approached me actually, about some of the challenges she had faced over her life as a person with disability, and again, trying to advocate on her own behalf. So I really appreciate you coming today Peg because often people want to come and talk about all the great ways to handle things, but that the fact that you approached me and asked me to talk to you a little bit about self-advocacy, and how to improve your record in terms of success around being a self-advocate, made me really want to have you on the show and have the opportunity to have this dialogue and share it, of course, with our viewers. So Peg, first of all if you don’t mind, tell me a little bit about one of the first times where you saw yourself needing to be a self-advocate?

Peg: For sure … then … ahh .. I am not sure if it may be the first time, but it was definitely something that sticks out in my memory. Ahh … when I was in high school, I tried out for the rugby team, and understand that I was active in soccer before I was an amputee and then after I was an amputee, and when I got into high school I didn’t have quite the skill level to make the soccer team. So when rugby was offered, I said, well I’d like to be active again, so let’s try it out. And …. Ahh.. I made the team, did the practices and, you know, got bumps and bruises just like everybody else. Ahh .. yet when the first game came I was taken into the principal’s office at school and they told me that I couldn’t play the game because I was a liability.

Tova: Right, now let me just stop there and make sure I am getting it – I am a bit of a paraphraser. Ahh … first of all what I am hearing is that you are an athletic kid …

Peg: Mmhmm

Tova: Forgive me, young lady now, but at the time we can call you a kid, right?

Peg: For sure.

Tova: You’re an athletic kid, very busy in sports….

Peg: Mmhmm

Tova: You did have an amputation around that time in that high school time, or ..

Peg: Just before

Tova: Just before … so as you transition into high school, ready to be an athlete again, of course, the concept for people to understand and appreciate that the fact that you have an amputee and you use ,,, and you use … umm …you know … ahh … prosthetic, somehow in their minds meant you couldn’t play at all. Now they said you were a liability?

Peg: They said I was a liability, someone might get hurt. Which is awfully funny because it is rugby. You look at the sport itself – it’s a tough game and I am not that tough of a person, but the fact that one part of me was, you know, a little bit tougher than the rest, was a … errr .. it was a shock because it was really the first time that I had ever been discriminated against. So that was … that was hard to handle for a, you know, a teenager, and ahh …

Tova: Certainly at that time especially because you were so vulnerable to the experiences of what we hear, and we start to, of course, buy some of that, and that’s of course, a greatest fear …

Peg: Mmhmm

Tova: And one of the things I want to share with you that makes a great self-advocate, that others don’t necessarily always think about first, is the capacity not to let yourself complete the dialogue that they started.

Peg: Yes

Tova: For instance, with anyone with a disability, of course, that … that dialogue being, “well maybe I am not good enough to play, maybe they’re right, maybe the liability is me”, and of course, if we continue that dialogue internally and carry on where they left off, we’re in a much worse shape to start with. So I do want to share with you – you did something very wonderful and that’s the first step of being a self-advocate and that’s not finishing their negative dialogue, but saying, “wait a minute, I know that not to be true …”

Peg: Mmhmm

Tova: “and I know that I need to make sure that they understand that what they’re saying is not equalizing the playing field, but treating me like special”, and of course special meaning put her aside, thank her for being here, pat her on the head and send her on her way, because we have a certain fear around, you know, someone who has a prosthetic play rugby.

Peg: Right

Tova: Now as devil’s advocate, I first have to ask you, was there any doctor or any medical expert who felt that it might be more dangerous for you, or for anyone else in the game … if you were to play?

Peg: It wasn’t through any doctors, it wasn’t through any kind of medical professional, and it didn’t … it just didn’t make sense to me because I had been playing in that .. ahh.. in provincial sports before as an amputee, and as I said and before I was an amputee, so it just didn’t make sense to me.

Tova: So the deal is when something like this happens, whether it is a school issue with a doctor, or with anyone, you feel that you were not being treated fairly, because fair and equitable is what it is all about in our community; what Inclusion Revolution really fights for. So, you clearly met a place where you didn’t believe it to be fair.

Peg: True.

Tova: You understood that, but you weren’t quite sure the next steps to take. Although you already took the first step as mentioned, which is not to buy what they’re selling in a sense, …

Peg: Mmhmm

Tova: And to be sure that that’s medically not the case.

Peg: Mmhmm

Tova: Your own doctor, or any of your own medical people you had spoken to; no one had concern or had provided you with any reason where they would like you to avoid sports.

Peg: Not at all! In fact, it was quite the opposite because they wanted me to lead a quote-unquote, normal life just like, you know, the ahh.. the other players on my soccer teams in junior high or … or before then.

Tova: So, your medical experts were saying “go for it” ..

Peg: Yeah!

Tova: And clearly the school had some concerns about what it might mean. Now I do want to say to you what I tell a lot of people when I do disability awareness training, and that is I really don’t believe it’s a lack of sensitivity as much as lack of knowing. I am certainly not defending every decision that has ever been made based on lack of awareness because we should educate ourselves better …

Peg: Mmhmm

Tova: But I do have that … I do believe that to be so and I believe it is important to identify that. Now, what was your first steps as a self-advocate that you took that you felt were important? And can you also share with me a little bit why you chose those steps.

Peg: Sure thing. Ahh … well I mean the first reaction was to cry my eyes out because I was upset. Ahh … after I got over that, of course, I told my parents and I am sure they were the ones that really drove the next step which was getting in touch with old physical education teachers, ahh … from junior high and elementary school, ahh … getting a hold of … ahh … my soccer coaches from summer leagues and also from junior high because I played for the school team. Ahh .. and … in .. in getting those letters of support from them to help prove that, you know what, I am just like everybody else and I can play the game just like everybody else. So that mostly was … was … were the first steps that I took.

Tova: Right. Now there were logical steps again to have proofs essentially to go towards .. ahh .. trying to change the mind of the powers that be by saying this is what the medical experts are saying, this is what my coaches are saying, and perhaps if you were to read that, that would change your mind. And certainly that is a certainly a reasonable step to self-advocacy. How did it work out?

Peg: It … (laughs) … well

Tova: (laughs)do you mean it didn’t?

Peg: (laughs) It didn’t

Tova: (laughs) okay

Peg: It was probably not the best …ahh … effort. Well I mean it was a good first effort on my part, but, you know, there was just not a lot of follow through on my part because, you know, I … I, I just started to actually kinda believe what they were trying to tell me …

Tova: Right

Peg: As you said and it’s not that I .. I lost passion because I still went to the games and supported the team. It hurt a lot to just sit on the sidelines because I knew I could be out there.

Tova: Well first of all let me again appreciate the fact that you show a great deal of character in continuing to support a team even though you, yourself, were excluded and aren’t quite sure how you could have perhaps handled that a little better.

Peg: Mmhmm

Tova: What I do want to say right off the top, and … ahh … again this is relevant to all of our listeners when we try to advocate about any issue is … I love that Judge Judy, not all the time but I take in small doses … and one of the things she says is paper wins. And I always believe that no matter what when we are talking about self-advocacy, we need to start out little scribbler and we need to keep everything in that scribbler that we’ve done towards the school, talked to, what time we talked to them, what they said, when they said it, what your Follow-up was and, of course, everything else. And it may sound rather mundane to some people or to be honest with you, it may just sound like more work than it is worth, but the truth be told with a paper record of your activities, you are really quite frankly a hundred times likely to have success because people can’t go back and say I didn’t say that, or that never happened, or uhh …and you know, I am not saying that did happen, but I am saying it does commonly occur in any self-advocacy issue.

Peg: Absolutely

Tova: So what I’d like to do is when we come back, talk about some of the ways that situation, maybe as an example, could have been, taken through it again, (unable to transcribe)

Peg: Yes

Tova: And I’d like to share with you and share with our viewers, when we come back from our break, what that’s going to be. I’m here with Peg Britton. We are talking about one of the most important issues we can, and that is self-advocacy for persons with disabilities, and how some of the really best practices. So do come back after this break. We’ll be right back.

Music interlude

Tova: Welcome to Inclusion Revolution here at Eastlink TV. I am your host Tova Sherman and, again, we have Peg Britton with us and we’re discussing some of the challenges of being an effective self-advocate. And I am very pleased that Peg has come to us and asked us for a little bit of information around it, and allowed us to use this dialogue as an opportunity for you the viewer to share in some of these strategies. So Peg, just before we broke, I believe we were going to come back and I was going to give you my two cents worth on this story, and perhaps share with you some of the …. Ahh … some of the strategies I believe that are highly successful, and have been proven highly successful in my experiences. And of course, I go back to the paper. And I believe that although you did some really clever work in reaching back and getting letters from doctors about your own strengths and competencies, it might be very helpful, especially for institutions, to receive something from someone who had been in an institution who’s recognized, who could talk about the fact that after amputation, one can still actively, you know, do things; and that person could certainly give examples, whether it’s a medical expert, or perhaps an athlete. You know, and, and providing them that opportunity – again not because of the lack of sensitivity but show them the awareness from an environment that they understand and they can accept, because often institutions like to hear from institutions, and so on. And that might have been my first move, but I would not just send the letter, I would clearly have a cover letter and in that cover letter I would make it clear … uhh … as to my concerns, as to the discussions that you had with the experts – please see enclosed letter, you know as an example of that, again to express your concern about the … ahh …inclusion of persons with disabilities if this is happening in a sense of what else; so I think it is important to look at the broader issue as well, ‘cause really you’re the kind of person I know who cares about the broader issue, what happens to the next young person that comes through.

Peg: Mmhmm

Tova: And I know that weighed on you as we were talking about that. And it is important when we … we advocate, we determine what we want out of it. For instance, if it’s revenge, some people like revenge, your tact is going to be very different.

Peg: Mmhmm

Tova: My tact is based on wanting a conciliatory result that is a win/win for everyone and perhaps even three wins because that person coming the next time won’t face some of these stigmas you experienced.

Peg: Mmhmm

Tova: So, in addition to the letter we have that cover letter where we are talking about timelines. What I mean by timelines is we should always request a time by which we are responded to. I feel that’s very important. Otherwise, we don’t really .. we’ve given them the wide end … get back to me in a hundred and twenty days, which, of course, in my world would be forever, especially on issue that matters so much.

Peg: Yeah

Tova: So it’s important to give a reasonable timeline as to when you would like to be responded to; to request responses always in writing.

Peg: Mmhmm

Tova: Because often times, calls get very heated ..

Peg: Yeah

Tova: And then nobody quite remembers exactly how it happened and you get an awful lot of stories. So I think it is extremely important that you do your self-advocacy work in writing.

Peg: Absolutely

Tova: Anything from that point that … you know …at this stage that … that doesn’t make sense or you wanna … ahh … ahh ask more, I know that I am doing all the advising here, but then again you asked for it … so … ahh …

Peg: I know, and, and I thank you for that. I wish I had that knowledge when I was sixteen or, at least, you know, a little bit more to go on. Umm as for more questions, I know I had plenty for you. Uhh, mostly … especially if you’re a young person, sixteen, seventeen, in high school, hhhow …ahh.. you’ve accepted you’re not buying what they’re selling, umm … what’s your next step aside from writing? So say that organization or the school board, or whoever doesn’t get back to you. What do you do then?

Tova: Right. Well, we’re … we’re never advocating for it under any circumstance if we give a date and they haven’t responded, we then have the right to write a second letter saying that date has passed; we may want to look at who that person’s supervisor is, assuming there is, and it’s very important you determine who to write the letter to, because if you are going to write it, for instance to … ahh …ahh… ahh… a rugby coach, then … then you are going to need to send it also to some of the people in the higher ups.

Peg: Mmhmm

Tova: If it’s something to do with the medical records, again you may want to write the doctor about the release of your medical records if you’re having challenges, and it’s one of those advocacy pieces I have experienced a lot ..

Peg: Mmhmm

Tova: But, at the same time, you might want to also write physicians. Ahh .. the School of Physicians, but again, it’s about what do I want. If I want to play rugby, then the most important thing is to educate in a way that doesn’t alienate the people you’re talking to.

Peg: Mmhmm

Tova: So, the anger has to go to the back burner if effectiveness is more important than revenge.

Peg: Right.

Tova: And that’s one of the most important things that are really the biggest challenge to self-advocacy is managing your own frustration and anger, so that you are being productive rather than biting off your own nose or something like that just because you’re so frustrated, and justifiable perhaps.

Peg: Mmhmm

Tova: So again I keep going back to that control and understanding of your own emotions, understanding what your purpose is in doing this, and if your purpose is to open the doors and educate, then you might want to talk about the availability of disability awareness training if they were interested, that you have spoken to an agency and they’ve said they’d be willing to come in and talk to you; like, think about what you want, and then how you can get it.

Transcriber note: Not sure if text is missing here … program was broken down in two parts for me.

Tova: I have to work on a whiteboard, I joke about it, but I live by the whiteboard. And, you know for me, I might draw a circle in the middle and say this is the thing I most want, accessibility or open-door policy for other people and myself.

Peg: Mmhmm

Tova: If it’s that, you’re going to have a different off-shoot of ideas than if it’s revenge. Because revenge means I’m going to get back to them, I’m going to go to the Press, I’m going to make life hell for people, that’s not something I support.

Peg: Mmhmm

Tova: Because I find again, it takes a great deal out of everyone and no one moves forward. But again, if it’s that productivity, then your anger in check, and a game plan that makes a lot of sense. First of all, understanding what you’re trying to get out of it, and showing you have the right people onside. Considering who would be a person or a letter that would affect the people that you’re trying to advocate with. Because, for instance, with doctors you might want a letter from another doctor a specialist, you know there is a lot of those.

Peg: Mmhmm

Tova: Whereas in the case of … umm … umm … a team, you might want to have, like I said, an Olympian athlete talk about it, and so on.

Peg: Right

Tova: I mean, it really is who am I advocating to, and who will they listen too.

Peg: Right

Tova: At this stage we have pretty much determined you’re not going to be their source of decision.

Peg: Mmhmm

Tova: They’ve let you know your word will not change them at this time. So it’s who will. The strategy and having a plan, being consistent with what you want – don’t changing your mind about, you know what, I’m … I’m angry now …

Peg: Mmhmm

Tova: I’m changing my whole tact. Then you’re starting over. Keeping the anger intact, keeping everything in writing, keeping a little bit of a journal ‘cause they may just choose to call you and to expedite conversations, but then you have to say – perhaps what I do, and what I do is I follow up a conversation with an email outlining the key points and asking them for confirmation – in other words, is that what you’ve heard. The beauty of that is two-fold. One, you do make sure you’re on the same line, …

Peg: Mmhmm

Tova: Which I think is … often, doesn’t happen even though we think everyone’s saying the same thing … it is a little bit of babble, you know, …

Peg: Mmhmm

Tova: We’re all talking, but somehow coming in different languages. But ensuring that through the email is very important. It gives both people a chance to reflect on the meeting and determine that that’s what they heard. And then if it isn’t, then it gives that recipient the opportunity to say, well I understood this and this, and, first of all everything’s in writing.

Peg: Mmhmm

Tova: And second of all, there’s a real clarity in the communication. And whereas on a phone it’s a moment, I don’t remember what you said, I think she said this, and I know I personally am a little bit known for hearing, not necessarily exactly what was saying and maybe inferring..

Peg: Yeah

Tova: Which is one of the reasons I got into the habit of following up with an email and outlining the key points and actions…

Peg: Mmhmm

Tova: It’s very important when we’re communicating with someone around an advocacy issue, we attempt to end every communication with an action. Where it’s I will send you the information I’ve compiled that shows you statistically there’s no particular reason to concern about this, or the agency that I’ve talked to is willing to come in and talk to you about disability awareness training in the context of this issue, you know and so on. So you always have an action because someone like me can’t ever end a conversation without an action. That’s my need and maybe that’s a little of my ADHD playing in but the truth be told, it’s actually a fantastic way to hang up that phone, or end that email with sense of the next step.

Peg: Mmhmm

Tova: And I think that if we lack a next step, we’re going face great challenges in our advocacy. So we’re going to take a quick break and … ahh … wrap up a little bit with you Peg, and also, of course, include my poll of the week, as well as … ahh … my news of the week. And we are trying to keep it all relative to self-advocacy today because we think it’s important.

Peg: Mmhmm

Tova: We’ll be right back here on Eastlink with Inclusion Revolution. I’m your host Tova Sherman with Peg Britton. Come on back.

Music interlude

Tova: Welcome back to Inclusion Revolution and our discussion on self-advocacy today. We’re continuing along with Peg Britton who has some interesting questions about how to be a success self-advocate, and I hope that all of our listeners and viewers are enjoying this information, and able to apply it to something they need to advocate on. So Peg, when we stopped for the break, you know we really got to the point about why it’s important to have paper, letters, to continually check your intent ..

Peg: Absolutely

Tova: And to confirm what your goal is. So let’s presume we’ve done all these great things, they want to have a sit down meeting. I often recommend that you do not go alone. Even though the term self-advocacy is about self, I think there are periods thorough-out this process where a smart self-advocate will call on resources that are appropriate. For instance, you want to talk to them about perhaps the opportunity to do disability awareness training so their staff understands better how to include, and when not to exclude for instance, persons with disabilities as you know there’s opportunities to bring that to the table as well. I’m also really interested in if you were to go to a table sitting, that you might take someone from, for instance, an agency that understands either physical disability and can dialogue on those issues. Ahh very tough to get a medical expert, but boy would that be snazzy ..

Peg: (chuckles) try it anyway (transcriber note: not sure what was said here … tone very low)

Tova: and … best of luck on that, let me know how it goes … and, but also you want to make sure that who’s ever with you is someone who can hear for you as well. ‘Cause often times in these, although there shouldn’t be, there is a certain sense of confrontational because you’re asking them to change their minds, in whatever the issue. With that feeling in mind, it’s important for any self-advocate to have the opportunity to just really focus on what they’re hearing and responding and having a second person there to kinda hear as well. I also, of course, recommend this with doctors when we get … you know, they call us in and we’re a little nervous, it’s good to have another person’s set of ears.

Peg: Mmhmm

Tova: Now you do not want to show up with an entourage, you know, like some rock star, cause that also can create some animosity.

Peg: Yeah

Tova: And often times it can go both ways. I walked into a meeting where I thought I was meeting one person, and seven people showed up. The irony is, of course, that I thought they were under-represented, and I felt bad for them, but that’s another story. But, you know, in your case making sure you’re protected, that you’re comfortable and you’re secure. And, this is really tough, what happens and when do I decide it’s not going to work.

Peg: Mmhmm

Tova: And I know we talked about, do you give up, and although I don’t use that term so much, but we also have to know when to cut our losses and pick our fights.

Peg: Mmhmm

Tova: And I by no means am suggesting on your particular issue, cause that’s not what I am referring to, but in general when we talk about self-advocacy, we have to continually keep a tab on the toll it is taking on us, and the people we care about.

Peg: Mmhmm

Tova: And, ultimately at what point, if there is a point, where it’s becoming more about harm than help.

Peg: Sure

Tova: And it’s a tough one.

Peg: Yes

Tova: Because I can’t tell you, and only that person can.

Peg: And you don’t know how far your …your persistence in the issue will spread. So, even if you think you’re doing the right thing, you may not have the perspective to look back and say, oh, but I have affected, you know, some members of my community, or members of associations, and they’re taking their time out, and things like that. It’s important, you’re right, to absolutely take stock when you can, and kinda get that third party perspective from your own instead of …

Tova: And as a young person, in all fairness Peggy, that you, you’ve brought up from one particular example, and I’m sure you … and I know you meant more about but we’re just focused .. (transcriber note: not sure what was actually said during the last part of this sentence)

Peg: (laughs)

Tova: So the idea of a young person, and I think that’s really important because we don’t’ really teach youth self-advocacy. And I think it’s so important as we decide what we do want in the world, and what we believe is right, and we create our own sense of morality, we must have an environment where that is then activated in a productive way. And again, just like the people who don’t get some things like disability, some people don’t get how to advocate, and again, if we don’t provide them the tools, we don’t consider them insensitive in the way they advocate it, we consider them unaware. And it goes both ways.

Peg: Mmhmm

Tova: So awareness about how to be good at self-advocate, and when to cut your losses if it’s becoming such an issue for you that your own health is becoming … ahh … challenged, you need to be as I mentioned in check; but on the same hand, the goal of improving awareness, so that the right is heard, in other words, what is reasonable is understood, is the ultimate success in self-advocacy.

Peg: Absolutely

Tova: And I think that’s .. that’s what we really all strive for in any situation, whether it’s advocating on behalf of yourself in the workplace around an accommodation you might need which might be very minor.

Peg: Mmhmm

Tova: You know, I need to get up and stretch every fifteen minutes, you know, and that’s … that’s it. But we need to communicate it, we need to become advocates for it, and I know you are one of those people who gets it and will certainly will be a tremendous role model for other young people in advocacy issues. So let me jump to our poll and our news before I say thank you to you Peg, because I do have tell you that the Canadian Paraplegic Association of Ontario gives six quick self-advocacy tips; and if you want to check theses out you go to “cpaont.org”.
Number one: Think about your body language.
Number two: Stay calm.
Number three: don’t use negative language when you’re talking.
Take notes, send a letter, and, of course, propose solutions. Now if you’d like to come to Inclusion Revolutions.com, you’re going to be able to answer this poll. Do you think older buildings should be required to be accessible, despite the cost to the owner? Check out Inclusion Revolution.com to answer that. Peg Britton – thank you so much. We’re going to see you next week with another Inclusion Revolution. Until then, I’m Tova Sherman. Have a great week.