Advocacy Matters, with Adrianne Haslet
Episode 123: Advocacy Matters, with Adrianne Haslet
After losing her leg during the terrorist attacks at the Boston Marathon, Adrianne Haslet decided to dedicate her life to being an advocate for amputee’s and amputee rights. On this week’s episode, Adrianne talks about some of the most challenging situations amputees have to go through, lack of insurance coverage, and why there is a need for change regarding prosthetic coverage. She also talks about steps anyone could take to support the amputee community, educate the ones around us, and to make workplaces more accessible. Tune in to hear the inside scoop on Adrianne’s journey from a ballroom dancer to a changemaker for the amputee community.
00:12 Kristy Wallace: Hello and welcome to the Ellevate Network podcast, this is your host, Kristy Wallace, with my co-host Maricella Herrera. How's it going Maricella?
00:21 Maricella Herrera: Hey Kristy, all good.
00:23 KW: It is a good day.
00:25 MH: It is, it is and I'm so excited for our guest today.
00:29 KW: Yes, Adrianne Haslet is a phenomenal, phenomenal guest. She was. We had lots of fun on this podcast.
00:36 MH: Yeah, she was a speaker at the summit earlier this year, which I can't believe it's been two months from the summit.
00:46 KW: Wow.
00:47 MH: Right. [chuckle]
00:49 KW: Wow. And she was... Adrianne, so for those of our listeners who haven't heard us talk about the summit. We had this phenomenal summit. An action summit talking about equality back on June 21st, in New York City. But do not fret, if you happened to miss it because we have tons of videos up on the website at Ellevatenetwork.com including a video of Adrianne's speech, which just blew me away. I know my kids... All three of my children were there. And the audience listening to it, and my son was supposed to leave to go somewhere else and he couldn't leave, he just couldn't... He couldn't leave.
01:26 MH: Really.
01:27 KW: And he kept looking at me and watching her and looking at me, and so ended up my husband was waiting for almost an hour on the train. [chuckle]
01:37 MH: I didn't know that.
01:38 KW: For him to come. Yeah, he was so inspired by what she had to say. And our listeners will hear more about the story, but just everything Adrianne has to share; her story, her inspiration, her resilience, is just a message that all of us can learn from and all of us can see part of ourselves in. And that was with my son Benjamin. I just think he really needs to hear these stories of just grit and determination, of self-confidence, of saying "Yes I can do this." And believing in yourself and overcoming challenges and obstacles. And I hope Adrianne's listening to this. 'Cause you... You not only changed my life but certainly had a huge impact on my son as well.
02:35 MH: Awe. That's so great to hear. I'm so happy that Ben got to hear that. And I'm also really happy because we've heard from a lot of people who were at the summit that Adrianne's story really made an impact in their life, and that's... I mean that's why we do what we do, I would say. That's why we put together an event like the summit, where we intentionally bring other voices that aren't usually in this conversation, where we bring people who have incredible things to say that may not have the same platform. I know Adrianne is an incredible speaker and she's spoken in many other places and conferences before, but having her there with... I believe also the audience that we have, which is very much curated and very much a very specific set of individuals who care about equality, who care about making the world a better place, who care about pushing other people forward. It becomes such a powerful combination. So, I'm just really, really glad that people were able to hear that and that Adrianne was able to join us. She joined us for the whole day too, which is great.
03:55 KW: Yeah, no, it really was. And I would say with Adrianne and my conversation with her that I have really tried to be intentional about meeting different people from different backgrounds and different experiences, and listening to them and understanding what they've gone through, what their challenges are, and Adrianne is an amputee. And it was a conversation that was a first of its kind for me. So much of what she said was an experience and an insight that I hadn't heard before and so I appreciate the work that she does to raise awareness around disabilities, disability rights, around access to healthcare. To really elevate a conversation that many of us probably aren't hearing and we need to hear. It is such an important conversation. And I know for me personally, I'm gonna work a lot harder to speak with more people that have disabilities, have different experiences around that, to be a better advocate for them.
05:17 MH: That's important.
05:19 KW: Yeah. And that's what we all have such an opportunity to do, is just to listen and to learn and to take action, and that's what our summit was all about. So without further ado, here is my conversation with Adrianne. I hope you enjoy it as much as I enjoyed speaking with Adrianne and getting to know her better.
05:53 KW: Adrianne, it is such an honor to have you joining us on the Ellevate podcast.
05:58 Adrianne Haslet: Thank you, it's wonderful to be here.
06:00 KW: So you are just an incredible advocate.
06:05 AH: Thank you.
06:05 KW: Can you talk a little bit about your path to why being an advocate is so important to you?
06:11 AH: Yeah, it's extremely important to me. And before I go into that, I wanna thank you for everything that Ellevate stands for, and for articulating that so well that you always do. I stand for making sure everyone has a voice as well. And I think, advocacy started for me just as a result of learning and I think that that is something that is so, there's such a common ground with people that you see something and you can't not do something. So I learned more and more when I became an amputee, which for those who don't know, I became an amputee at a terrorist attack at the Boston Marathon in April of 2013. It's now been over five years, which is crazy. And I remember the exact moment, I was in my hospital room taking a deep nose-dive into the rabbit hole of internet searches, when I was in my one of my darkest hours, and, which you should not ever do.
07:10 AH: And [chuckle] I remember seeing a blog post that... Two blog posts that were clearly abandoned. They were years and years old, and the first entry, the two entries, first entry was titled, "I used to be a ballroom dancer, now I'm an amputee." And I was so out of it at that time after my second surgery, that, I thought, "That's really sad for that person." Even though that was my exact story. And then I looked at the title of the next blog post and it said, "I'm so nervous to go back to school because I don't have a leg. My parents can't afford it." And I thought, "How horrible is that? These things cost money?" I didn't even know that they cost money. I thought they were just picking up contact lenses or eyeglasses and I was so mortified for her because she was clearly a teenager of some years old. And I know, I mean as if being a teenager, isn't hard enough, right?
08:06 AH: And I just immediately thought, "Am I gonna be able to afford this? How much do these cost? Why can't her parents afford it?" And I have never been able to return to that blog post in a million clicks. But it was in that moment that I thought, I can't believe that. And then poured in the One Fund, which was incredibly giving and it was then that I thought, I need to do my research because we were clearly taken care of in Boston which I'm indebtedly grateful for, but there's no reason why we shouldn't take care of others.
08:39 KW: Yeah.
08:41 AH: It's not just about me. So I advocate because prosthetic legs are not covered under insurance and if they are, it's a very small percentage of a $17,000 leg, which is what I wear and that is just below knee. So if you think of having a knee to that, it's horrendous, but that's not covered. So therefore, we need to advocate that it gets covered, and we need to advocate that it's not a luxury, it's something that will return us to the workplace. That will return us to everyday lives and being able to walk across room and go to the bathroom or walk across the room and kiss your loved one at eye level and not in a chair. And have kids go to school and not be afraid that they're being made fun of like that young girl was.
09:24 KW: Thank you for sharing that story. And your advocacy is so powerful because my sense is, and correct me if I'm wrong, that with prosthetics, they're created in such a way and they have advanced so much that you wouldn't notice it, to an outside observer, you may not know someone has a prosthetic. But part of raising awareness, part of creating change and opening people's minds, two things like the health care costs or access to prosthetics, or all of that, just even amputee rights is shining a light on it. And so how do you deal with the, "It's not so obvious, you may not even know that someone has a prosthetic, but yet we really want to amplify this conversation."
10:11 AH: Yeah, great use of the word the amplify by the way, was we always talk about that word, in the amputee community. I think it's really important, I've been told that I don't need a service dog because I'm walking normally, when I'm with him and that's infuriating. And so, we do want people to know, we do want to show people. I think one thing that is overlooked as far to the answer your question, is it overlooked, is, and I've been a victim to this as well, is the incredible money that's poured into technology for prosthetics, for just ideas. So some people might remember that I did a TED Talk with Hugh Herr and I danced on that super fancy leg and everyone thinks I used that for dancing because it was such a platform and now he's traveling the world still talking about it as if I still use it and it's awful. I only used it once and everybody thinks that he saved me and I have so many and I can dance on my other leg and I had to learn how to do that because I wasn't able to use that more than once. And so many other amputees that I've met have been introduced to technology and that's in, we have it in Super Bowl commercials, we have it in every magazine in print, and ad in movies.
11:27 AH: There's a movie out now with the Rock, who's an amputee. I like the Rock, he seems like a great guy. I don't like the writers and creators because people are gonna think that you can do everything that he can in a prosthetic leg and it's lies and that's the same technology and in our Super Bowl commercials, people are doing incredible things but what they don't know is what do you use on an everyday basis? So those legs are not covered under insurance, they're not accessible. And I think we need to direct attention to that and get that word out there. You can't provide Ferraris for everybody and the latest computers for everybody, if we don't even teach them how to type or have the basic computer covered or the basic bicycle covered, it's just not, it won't get you anywhere.
12:11 KW: You mentioned the amputee community, what are some of the other opportunities for discussion for change, for action that are very important to the amputee community?
12:24 AH: I'm so glad you ask the question. Most people don't ask that, it's just about prosthetics. One thing that I think is crucial is really educating people in the hospital before they are fit with a leg, before they meet with our prosthetist the first time that, what to ask, when you meet your prosthetist. Because if you have insurance, health insurance, they will cover just one meeting with the prosthetist and so those other meetings, so if it's gosh, it's just like a therapist, and someone is gonna get very intimate with your body, with your limb, with something that has just happened to you, and that's not a fit for everyone. And just like we wanna interview doctors before they start touching us, we as amputees in the community, want to be able to interview other prosthetists. So we are only given that one appointment and the others we pay cash for. And so I think that frequently asked questions like, What do you need? It can be just that simple but getting someone off on the right foot, not to sound like a pun is so crucial to be able to have that good relationship with your prosthetist, it will make or break your relationship with your leg, hands down. I think that would be the other thing. Definitely.
13:38 KW: What are ways that we, our listeners, myself, can be better advocates for you and for others in the community?
13:49 AH: The one thing that everyone can do that's really important is to give some time like give five minutes and look up to see if your health insurance covers and if they don't write them and write Congress because they're trying to take away that coverage. There was recently a bill that I helped overturn that was almost passed to the White House, and it went through every stage before that, and it was the Not a Luxury and bill that said, that if you use a mobility device in the hospital such as a wheelchair or crutches or a walker, then you've proven that you don't need a prosthetic leg, and...
14:32 KW: I'm sorry, that makes no sense.
14:35 AH: Number one, it makes no sense. Number two, obviously you have to use those mobility devices when you're in hospital otherwise, you injure yourself and the hospital gets charged, so you have no choice but to use them, obviously, you need to anyway if you wanna get out of bed or use the bathroom, or leave the hospital. So if you did that, then you wouldn't be able to use one. And they were trying to cut healthcare. So I think just looking up to see if your health insurance or your state has any laws or coverage. We just passed in this state alone, in New York just three years ago, we passed the One Leg a Lifetime law, where if someone was a child or an adult you would just have one prosthetic leg, and that was by law, so every prosthetist was actually going, if someone wanted to fight it, was actually having to go to court to overturn it for their patients. That was just passed three years.
15:21 KW: That also makes no sense. [chuckle]
15:22 AH: It makes no sense that is true in a lot of different states. So I think there are lots of things that people just don't know and I can't and for those people that might be listening and feeling guilty. Let me tell you, I was right there, I had no idea about any of this until I became an amputee.
15:38 KW: That's the reality with so many things, you don't know. About maybe maternity coverage. Many people don't even think about maternity coverage until it's time to have a baby, and then you're, like. "Wait. This is really crappy coverage." Or cancer coverage, or health screenings. There's just... I think you just don't know until it actually affects you, and unfortunately it actually affects you after the fact. You find out after you get a $600 bill for preventative screening that you're like, "Wait a minute. Why am I being charged $600 for this?" But what happens then is you either say, "Okay, well that really stinks and I'm annoyed, but whatever." Or you say, "This really stinks, I'm annoyed and I'm gonna change this. Not just for myself but for everybody who comes behind me, because this is not the way it should be."
16:38 AH: Exactly.
16:39 KW: And it takes a very special person to say, "Oh no, no, no. I'm changing this for everybody," and that's who you are.
16:47 AH: Thank you, that's very nice to say. Thank you. Like I said earlier, the more you learn, the more annoyed you get, but then we have little victories... I say little... Big victories, like New York, and that's incredible. Another thing that people can actually look in their health care version and we're fighting it right now is the pre-existing condition, and that's an amputee as well. I know that goes to a lot of different things, but it's maddening. And there are so many things that affect us in so many ways, and there a 2.1 million amputees in the US alone, 508 new amputees every single day. And that's not just diabetes and cancer, that's trauma as well. 800 children every year from riding lawnmowers; I don't know why children ride lawnmowers. But it's sad. And so I think unfortunately so many people's eyes will get opened up to this because they're like you, will have a family member or a friend that is an amputee and can raise awareness for it and open their eyes.
17:49 KW: Okay, so to our listeners check out your health policy, your coverage, what are the laws in your state, in your city, and do something about it. We live in a time where speaking up is so easy, it's as easy as a phone call, an internet search, an email. And if you're as moved by this conversation as I am, we can all do something. You can do it while you're listening to the rest of this podcast.
18:20 AH: Yes. I'll do a little plug right here if you don't mind, to MobilitySaves.org, will tell you that it actually costs more to every American in taxes to not give someone a leg than to give someone a leg, so if you don't want to pay for that, we should just give them the leg.
18:36 KW: Yeah, yeah, wow. What's next for you? So you've accomplished quite a bit...
18:42 AH: Yeah, so thank you. I am gearing up to head to Ecuador for the second time in September, and two years ago I went to Ecuador on the 26th anniversary of the Americans With Disabilities Act, with Americans and Guatemalans and people from Ecuador, so I went there and climbed the mountain, Cayambe, and we shouted from the top that we needed prosthetic coverage. And while we were doing that, it was with a organization that I'm a part of called ROMP, it's Range of Motion Project, and they provide prosthetic limbs to those who cannot afford them in both Guatemala and Ecuador, and people will scoot and crawl for days and days and days to get prosthetic limbs, so I'm raining money and awareness for people outside of the US. We certainly have our issues as I've addressed here, but it's a global issue. I went to Nepal after those two quakes and helped out there as well, and I think it's important just to put it in perspective. Figure out what they're doing that's so simple that we can do. They do a lot of 3-D printing there that I think we can implement here a little bit more of to cut down costs, and 3-D scanning of limbs so we don't have to get people necessarily to the office, they can do that on the road. Doctors Without Borders adopted that, and ROMP is doing a really great job of doing the same.
20:04 KW: Wow. During the course of your work, I'm sure you've spoken at a lot of companies and hotels and conference venues and all of that. Have you encountered work places that were not friendly...
20:19 AH: Yes.
20:19 KW: Towards those with... Amputees or those with disabilities?
20:23 AH: Yes, I have, unfortunately. And I tell myself it comes from a good heart, but at the same time I think you can approach things with a good heart with an open mind or a closed mind, and that's really the difference. So if you have a closed mind, in my experience, when I experienced bad behavior was they had decided already that I was really immobile, that I needed a wheelchair the second I got off the plane, I had already run the Boston Marathon two weeks before, and I needed all of... They just made up their mind, oh, we're gonna have two men hold each arm while you're walking up the stage and they had already made up their mind where that, those limitations were. And as someone who likes to open people's minds about things, I just more appreciate a question of, "Do you need any help up the stairs?" I think that's really, it sounds so simple but it can feel degrading, 'cause that negative energy is gonna get around it certainly.
21:24 KW: Yeah.
21:24 AH: Tried to bring me down there, but yeah, I've encountered some different discriminations for sure. I took dance lessons after everything happened, I'm a professional ballroom dancer, prior to this and still thankfully, and I took dance lessons and the first dance teacher I had, just would not stop talking about my leg. He would not. Oh, can you bend that? Oh, does that hurt? Do you need to sit down? And it just... I had long conversations with his manager, long conversations with him and it ended up just needing to part ways because it was just too much for him to handle.
22:00 KW: Yeah.
22:01 AH: And it was too negative of a space for me to put myself in.
22:05 KW: And I think that that's most respectful interpretation. Imagining that for him, he just wanted to be very aware and making sure that he was making you as comfortable as possible and I'm sure it was a unique situation for him that he'd never been in. But on the flip side, I think part of advocacy work is removing some of the stigma, it's being aware and understanding but not having someone solely identified by a prosthetic leg or by something else.
22:41 AH: Yeah, definitely. I think when someone says, I don't wanna talk about this anymore, I know my limitations then you should just abide by by that right? [chuckle]
22:48 KW: I hear you. Done.
22:49 AH: [chuckle] Yeah.
22:50 KW: Are there any other...
22:51 AH: I crushed him in a competition later.
22:53 KW: Yes.
22:55 AH: Was that out loud?
22:58 KW: Alright. [chuckle] Did you just say that? Are there other questions and keeping on the theme of how we're building better advocates and awareness, but are there other questions or comments that you get that are particularly inappropriate or offensive? You mentioned assumptions about your dog and people, we speak through these filters that often times are pitted and broken through these bias that and pre-conceived ideas that are not true. So what else do you hear?
23:33 AH: So I know that there are a lot of moms and dads that listen to your podcast, and love it. I think one thing that I've heard countless times and I wear a running blade when I run, I'm an avid runner, and if I'm going in and out of a restaurant or even walking down the street, or in an elevator or in a plane, next to a child, and they see that either I have a plasticky looking foot or I have my running blade on and the child will say, "Oh mom, she doesn't have a foot." And it's coming from a place it's a child, it's coming from a place of, "Oh wow, look, this is different. I would like an explanation for that, when you see a dog for the first time or as a child you're experiencing the world, in a, "oh, I have so many questions way." And the mom says, "Don't say that out loud. Don't. That's really rude." And I turn around and if the mom doesn't look too scary or dad I'll say they're just asking questions. I welcome questions.
24:29 KW: Yeah.
24:30 AH: I speak about this for a living. And so I think that one thing parents can do is just to allow their children to ask questions. I know it's coming from a place of inquisitive, being inquisitive and it's important that people know that I welcome that and that a lot of people welcome that. What we don't welcome the parents discrimination of saying, "Don't say anything, don't look, don't stare."
24:53 KW: Yeah.
24:53 AH: I've heard that too.
24:55 KW: So at our summit last year, we had Amazon Eve, who is a transgender actress, and I brought my son, you'll meet him tomorrow, Benjamin, and he, while she was speaking, he looked to me and he's like, "Mom is that a woman a man? And I was like, "Well, Benjamin," and at the moment I was like, "Oh God, like this is too... Maybe this is too mature for him, maybe I shouldn't have brought him to this one," and I was like, "No, let me answer this question." I said, "Benjamin, she was assigned the male gender at birth, but that never felt right to her, that's not who she is, so she's a woman." And he looks to me and he's like, "Oh I know someone like that at my school." [chuckle] I don't know why I always cry.
25:42 AH: Oh my God. I'm gonna tear up...
25:43 KW: Yeah. A girl who wants to be a boy. And you think, just they have questions, they're coming from a good place, but just by being honest and answering them in a truthful way, think about what an advocate he'll be in the future for that girl or boy and for anybody else because instead of making it a secret and like, "Oh, don't say anything," we're saying, "Okay, let's talk about this."
26:11 AH: Yeah.
26:12 KW: "Let's talk about situations but in a thoughtful and generous way, so that you will be an advocate for others, because you understand and you know."
26:22 AH: What a beautiful moment with your son.
26:24 KW: Yeah. It was so amazing.
26:25 AH: That's amazing.
26:26 KW: But I still... And I've told the story a few times and every time it just... For me as a parent, was this huge aha moment of what an impact we can have on our kids and on them being inclusive and understanding and kind and generous and we need to do that more. And so your advice exactly what you said is so spot on, right? We just need to talk about it.
26:55 AH: Yeah. Just talk about it. I have a niece that, I just went home to, my home town of Seattle recently just last week, and my niece one of my nieces was now old enough to realize that aunt Aidee, as they call me, didn't... Did not have two feet that were alike, and she kept touching it and she's like, "I can feel it. Can you feel it?" And I said, "I can't feel it." And she's like, "It's a fake leg," and I was like, "No, it's just a different leg."
27:19 KW: Yeah.
27:19 AH: That's what we call it. And just teaching, just having that open conversation and it was my family, so they know...
27:24 KW: Yeah.
27:24 AH: First of all, they can't tell me what to do, but secondly, that I can dictate that narrative and she's learning and just to see her process all of it in person, of course she knows, we talk over the phone all the time, but she is knowing this and learning and seeing that, it just comes from such an inquisitive place that I hope that parents out there who are listening can just like you did. It's such a beautiful example with your son. Just educate, and be direct.
27:52 KW: Thank you for that, I think that it's so important. There's a quote that's on your website, that says, "When someone tells you it cannot be done, it's more of a reflection of their limitations, not yours."
28:08 AH: Yes.
28:08 KW: What does that mean to you?
28:10 AH: It started from a doctor coming into my hospital room, who was not my doctor, my doctor is my Superman. And the doctor came in and he said, "I saw your interview with Anderson Cooper earlier today, and you said you were gonna dance again, and one day run the Boston Marathon." And I said, "Yes," and he said, "I've been here," and he said, "I've been here for over 20 years, and I've never seen an amputee dancer. I just wanna let you know you shouldn't have hope. Your chances are one in a million." And I raised my finger in the air, and it wasn't this one. I'm using my pointer finger right now. I raised my finger in the air, and I said, "If my chances are one in a million, I will be that one." And he left and I'll never forget that because I believed him. I don't know where that one in a million thing came from. I had a lot of hate in my heart for what happened. I was willing to take it out on anyone luckily he deserved some of it, but I believed him and that was so depressing.
29:12 AH: I thought, "Well, this guy's been here for 20 years, he's never seen an amputee dancer." I hadn't yet either. And so, of course there were lots out there, I just had not been introduced and I was so broken and later on, after I started dancing, I just hoped that he'd watch it and learn and be able to, again, educate himself so that he can learn. And that quote now, resonates with any other type of dream I have, going to Ecuador and climbing an ice volcano is pretty darn difficult.
29:43 KW: Sure.
29:45 AH: And running marathon and doing all sorts of things are difficult, but it's just because someone else doesn't believe it. But you can when you have a good coach around you and good team and good people, then you can do it. And if you believe you can, it's not about what another person believes.
30:01 KW: Thank you.
30:02 AH: Thank you.
30:03 KW: Thanks for joining us today on the podcast, it's really inspiring to hear your story, and all of your resilience and grit, and I'm gonna keep watching to see what you do next, 'cause you're certainly incredibly inspirational to me.
30:19 AH: Thank you so much, thank you for all you do to empower women and men. To empower women.
30:25 KW: Yes.
30:25 AH: Yes. All of that. [chuckle]
30:31 KW: Thanks so much for listening to Ellevate. If you like what you hear, help a girl out, subscribe to the Ellevate Podcast on iTunes, give us five stars and share your review. Also, don't forget to follow us on Twitter @Ellevatentwk, that's Ellevate Network, and become a member, you can learn all about membership and all the great things that Ellevate Network is doing at our website www.ellevatenetwork.com. That's E-L-L-E-V-A-T-E Network.com. And special thanks to our producer, Catherine Heller, she rocks. And to our voice over artist, Rachel Griesinger. Thanks so much and join us next week.
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