[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:16] Joining me on the show today is Monique Stamps. Monique, welcome to Real Pink.
[00:00:22] Monique Stamps: Thank you for having me, Adam. Glad to be here.
[00:00:25] Adam Walker: Well, I’m glad to have you and hear a little bit more about your story and a little bit more about your journey. So let’s start with you share a little bit about your personal journey and what led you to become a disability advocate.
[00:00:37] Monique Stamps: Okay. So I am a woman with multiple disabilities. I am neurodivergent. And when I was 16 years old, I was injured in a car accident that left me with an incomplete spinal cord injury at the C five six level.
[00:00:55] And later I had two children after my injury and after giving birth to my first child, I survived a postpartum eclampsia stroke.
[00:01:03] That added a little more to my neurodivergency.
[00:01:07] Adam Walker: Yeah.
[00:01:08] Monique Stamps: Like memory issues, process and difficulties. And so I became a disability rights advocate out of both need, frustration, trying to navigate inaccessible spaces and constantly being treated like I was less than after acquiring my disabilities. So yeah, I wanted to change that not just for myself, but for others who come after me.
[00:01:36] Adam Walker: I love that you have taken what’s hard for you, use that as motivation to make it easier for the next person. And that’s a beautiful thing.
[00:01:45] Monique Stamps: Thank you. We all have to do that to make things better for the next Yeah. For people.
[00:01:50] Adam Walker: That’s right.
[00:01:51] Monique Stamps: Yeah.
[00:01:52] Adam Walker: But that’s a good attitude to have and I feel like it’s an attitude that, that too few people have.
[00:01:56] And so I love that you have that, that, that spirit about you. So, so what’s your experience been like navigating the healthcare system as a woman with a disability, especially when it comes to breast health?
[00:02:09] Monique Stamps: So my experience has honestly been quite frustrating. Just leaving the house with a disability takes a lot of planning and healthcare adds even more layers.
[00:02:21] Finding accessible, equitable and high quality care is challenging. With breast health, I struggled to find providers that had high adjustable mammography machines. And though that has improved quite a bit over time. You know, but even with adjustable equipment, trying to position my body, you know, when I have multiple, you know spasms or limited mobility can be exhausting and painful actually.
[00:02:55] Yeah. And often in my experience, technicians become impatient and speak to us in ways that make us feel like we have to apologize for our bodies. At least I know I do.
[00:03:10] I’ll go, oh, I’m sorry. You know, I’m sorry. You know, when I’m trying to..
[00:03:13] Adam Walker: Yeah.
[00:03:14] Monique Stamps: While also trying to navigate through a spasm or just being in pain.
[00:03:19] I find myself doing it a lot. You know when they start to project frustration versus empathy and understanding. Right. While performing the testing.
[00:03:34] Adam Walker: Yeah, I mean, I think we often think of like we think of the physical side. I think you even just mentioned some of that in your experience, but we don’t necessarily think about some of the less visible barriers that people with disabilities face when it comes to breast cancer screening.
[00:03:47] Like what are some of those barriers as well?
[00:03:52] Monique Stamps: I would say attitudinal barriers and stereotypes. Often lead healthcare professionals to make harmful assumptions. And I’ll just use this as an example, like that women with disabilities are not sexually active or don’t need routine screenings which result in lower referrals, referral rates for mammograms, or even you know pap smears and things of that nature.
[00:04:22] Some other barriers I would say lack of training and education about disabilities. Right. Providers may feel uncomfortable or ill-equipped to offer appropriate accommodations.
[00:04:36] Adam Walker: Right.
[00:04:37] Monique Stamps: Or even communicate effectively.
[00:04:39] Adam Walker: Yeah. Yeah. So you mentioned, like earlier you mentioned empathy and I think you’ve said empathy several times.
[00:04:46] I wonder, I’m wonder if we could talk about that for just a minute. Like what are, like, do you have any advice to a healthcare provider on how they might have more empathy for someone in your situation?
[00:05:00] Monique Stamps: I would say truly listening to get, getting to know the patient. Just I know you’re nowadays because of ins it’s get them in and out.
[00:05:15] But yeah truly getting to to know the patient and inviting us to the table when it comes to, research because you don’t see, I don’t get a lot of invitations or seeing a lot of research that includes people with disabilities. Yeah.
[00:05:38] So I think that would help you know, increase the training and having us at the table when they’re developing, you know the curriculum and these modules, you know, giving us a voice in it.
[00:05:55] policies, all of it. And the design of the locations, you know,
[00:05:59] I think
[00:05:59] help foster empathy a lot better.
[00:06:04] Adam Walker: Yeah. So I’m curious too, like how do issues of race, gender, and disability intersect in ways that compound some of these health disparities in, in your experience?
[00:06:21] Monique Stamps: Okay, so I’m gonna, I’m gonna take it back a little bit.
[00:06:25] Going back to even slavery, when J. Marion Sims used enslaved black women as medical test subjects without anesthesia.
[00:06:36] We see how race, gender, and disability have long intersected to justify exploit exploitation. Neglecting healthcare. And the legacy kind of continued with the Tuskegee Airmen Experience experiment which denied black men treatment to study disease progression and Henrietta Lacks whose cells were taken without consent.
[00:07:07] And even in with in 1973 Minnie Lee and Mary Alice Relf. Two young black girls with intellectual disabilities were forcibly sterilizing, Montgomery, Alabama. You know, and lots of cases like that. So these histories kind of show how racism, sexism, and ableism combine to create deep mistrust, systemic bias, structural barriers you know, that still shape health disparities today.
[00:07:44] Adam Walker: Yeah. And how, like how does that, I, I mean, I guess my question is like, how does that intersect with the disability issue? How does that, like how do those things compound together to, to create even more difficulty from your perspective?
[00:08:03] Monique Stamps: Well disabled women of color often face assumptions about their competence, worth and autonomy.
[00:08:10] You know, leading to under diagnosis, lack of consent. And denial of care. So you know, addressing those compounded inequities requires acknowledging the history, you know, centered, lived, centering, lived experiences Right. Then in order to transform systems that have treated black and disabled bodies as disposable.
[00:08:37] Adam Walker: Yeah, no, that’s, I mean, I think that’s a great perspective. So, so I wanna shift gears for a second. I’m curious, have you seen an example of a healthcare system or a doctor’s office or something that like, got it right? Like you felt seen, you felt cared, like walk And if you have, like, walk us through what that experience was like and what was so right about it?
[00:09:04] Monique Stamps: I, what comes to mind is it shouts out to Charlotte Radiology here in Charlotte. Okay. Carolina. They have a mobile mammography that has that has a lift on it. Okay. I actually, you know, got to check it out and you know the staff were very kind, accommodating, and understood, understanding, and you know, just treated me
[00:09:35] treated me like a human being, a human being.
[00:09:38] Adam Walker: Yeah.
[00:09:38] Monique Stamps: You know I called around to other mobile mammies, you know, in our area, and they don’t have a lift on their mobile mammography. It’s like, oh, you know, we don’t, sorry, but we can’t accommodate, but you can come to one of our local offices. So I really felt, you know, just something like that.
[00:10:00] It really. I really appreciated it. And there was plenty of turn space in there.
[00:10:06] Adam Walker: Yeah.
[00:10:06] Monique Stamps: The way I was treated. They definitely got it right you know from the parking lot to, you know, checking me in and getting me into the space. Yeah I felt very humanized. It’s like, wow.
[00:10:25] They actually thought of women like me when designing this the rv.
[00:10:33] Adam Walker: Yeah. So is it, I mean, so then I mean, I’d like to dive a little deeper into that. Like, so is it the attention to detail that made you feel like seen? Is it like the fact that they thought through your whole experience and each step of light?
[00:10:46] Like tell me a little bit more about like that and how it made you feel.
[00:10:51] Monique Stamps: Yeah. It was the fact that they, yeah, the attention to detail.
[00:10:55] And also while I was you know. Like getting the exam. You know, they asked me in that moment, Hey, you know while we have you here, is there anything that, that we can do to make things better?
[00:11:12] You know, even more Oh, wow. Yeah. Feel more accessible.
[00:11:14] Adam Walker: Okay. Okay.
[00:11:16] Monique Stamps: So, you know, I, I really felt seen in that way that they asked for my input.
[00:11:23] Adam Walker: Right on.
[00:11:24] Monique Stamps: You know.
[00:11:25] Adam Walker: So I mean, that, that feels like that’s a good lesson for every. Like anybody that sees patients is like, just ask how can we improve this for you?
[00:11:33] You know, I mean, I guess any patient that’s struggling with something like that, right?
[00:11:38] Monique Stamps: Yes.
[00:11:39] Adam Walker: Yes. I think I wonder if there’s a hesitancy, because they almost feel like, I don’t know, like maybe they’re shining a spotlight on someone with a disability, but I think the exact opposite’s true, right?
[00:11:52] In, in, in recognizing this and asking how we can make this better for you. It’s not like you’re shining a spotlight to make someone feel bad. You’re actually saying how can we further serve you? Right. How can we make this, how can we improve for you? Right.
[00:12:05] Monique Stamps: Right. Right. It’s it’s given us a voice at the table.
[00:12:12] That’s one thing I say all the time. Yeah.
[00:12:14] Adam Walker: Yeah.
[00:12:14] Monique Stamps: Anybody can have a seat at the table, but does everybody have a voice?
[00:12:19] Adam Walker: Ooh.
[00:12:20] Monique Stamps: In the, you know in, in healthcare advocacy, and I’m talking about from marketing to research to you know, design to policy. Do people with disabilities truly have a voice in that?
[00:12:36] And, you know, even when at local healthcare conferences, you know are they really reaching out to the disabled community to have us on the panels, you know you know, reaching out to your, to the local centers for independent living or our national organizations like Nickel or April, and to really have disability voices represented at the table in all aspects.
[00:13:04] Adam Walker: Wow. Yeah, that’s. And I love how you make the differentiation, not a seat at the table, but a voice at the table. Because in I always think in terms of people having a seat at the table, but that implies that they have to be willing to speak up and kind of have that. And most people are not, right.
[00:13:24] Like most people aren’t wired to like shout over the noise. And so, but having a voice at the table implies that they’re being asked to participate. And that to me is a very, that’s a very deeper thing. That’s a really profound statement you just made. Thank you. Love that. Where did you come up with that, by the way?
[00:13:44] I’ve got, I gotta all is that like a, your, is that your thing? Is that, where did that come from?
[00:13:49] Monique Stamps: So I I partnered with the North Carolina Spinal Cord Injury Association. Okay. Couple years ago. To start a conference for women di for Women with Disabilities here in North Carolina. And as we were coming up with the name for the conference, you know, me and, you know, the ladies got together and that’s one of the things that we were talking about.
[00:14:14] Like we, you know, having a seat and it kind of playing off of the first Black woman to run for president. She said, you know, if you don’t have a seat at the table, bring a chair. So we utilized her her quote and, you know, put our spin on it. It’s like, yeah we all, most of us come with our own chair.
[00:14:40] Well, yeah. So, so it’s like, do we have a voice though?
[00:14:46] Adam Walker: Yeah. You know. That’s beautiful. I really love that. That’s really beautiful. It’s a be a beautiful concept. So what advice would you give to someone that, that has a disability that’s trying to advocate for their own healthcare needs in a system that frequently is not made or designed for them?
[00:15:08] Monique Stamps: I would say, you know, write down your questions and priorities in advance.
[00:15:16] Be clear and assertive about accommodations. You have a legal right to them. Document everything, including who you spoke to and what was said and done. Trust your knowledge of your own body. If something doesn’t feel right, keep pushing for answers or get a second opinion.
[00:15:38] And if you can it’s not necessary. But if you can bring an advocate or a friend, family member who can help reinforce your needs or, you know, or to, you know, serve as support or witness to anything that goes wrong. You know, it’s always, you know, if you can have someone to support you.
[00:16:02] I would advise that, that as, as well.
[00:16:06] Adam Walker: Yeah. Do you have I’m curious too, do you have any advice, you know, you mentioned earlier that in our current healthcare system it’s kind of, doctors have to like in and out. Quick. You, they gotta move fast and see a lot of patients.
[00:16:20] Do you have any advice for a person that, you know, maybe they’ve got their list of questions. They’re feeling rushed in that appointment. Do you have any advice for those moments or those kinds of situations that kinda help slow it all down, you know, get the focus of the medical care professional, that sort of thing?
[00:16:37] Monique Stamps: I would in that moment, you know, for me I would because empathy goes both ways. Right.
[00:16:44] Adam Walker: Right. That’s right. Yeah. That’s good.
[00:16:46] Monique Stamps: I understand what the, you know the medical professionals and the doctors have on them, you know. Insurance pushing for, you know, in and out and all that. So I would say, you know, I understand, you know, that you have a lot of patients today.
[00:17:02] I understand that you know you’re trying to work through and get us in and out as quickly as possible, you know, however I really need to you know, so that you can truly understand me as a person. You know, I don’t want to feel like a number. And I, and I know that you don’t want to treat us, treat me or us as just as a number.
[00:17:28] Adam Walker: Yeah.
[00:17:28] Monique Stamps: You know, so here’s if we could just take some time and you know, just if that makes sense the way I’m trying to explain it.
[00:17:36] Adam Walker: Yeah, no, it makes perfect sense. It’s, it is beautiful. I mean I love your approach, like give empathy to get empathy, right. Which is, I mean a beautiful concept.
[00:17:45] And then you know. I mean even mentioning, I don’t wanna be treated like a number, and I know you don’t want to treat me like a number, like that’s like believing the best in the medical professional in front of you, right? Like, that’s not always easy to do, but I do think it’s important.
[00:17:59] Monique Stamps: Right, right, right.
[00:18:01] Adam Walker: Yeah, I like that. That’s great. So how can organizations like Susan G Komen better support people with disabilities, both in outreach and in direct care?
[00:18:12] Monique Stamps: Include women with disabilities in all awareness campaigns and materials. Representation matters. You know, you know, in the aspect so that we can see, you know, we see ourselves, you know it tells us Susan G Komen Rec recognizes that yes they know women with disabilities are, can get breast cancer like everybody else, but, you know we want to see it show and prove that you see us and that you want us at the table.
[00:18:46] To spread awareness about breast cancer and include us in the research so that everybody truly is educated, knowledgeable and can best advocate for themselves if they see it in in the campaigns and materials. You know, offer grants to cover accessible transportation or personal assistance for screenings and treatment, you know.
[00:19:18] Grantees and partners in disability inclusion and cultural humility. You know, create dedicated resources plain language guides, videos and captions, videos with captions and, you know, a SL interpretation, you know, all of those things. You know, and consulting with disabled advocates and patients to co-design programs.
[00:19:46] You know, thing, things like that.
[00:19:50] Adam Walker: Yeah. No, that’s, those are great. I mean and the things that you just said that just kind of rolled off your tongue, like they were no big deal. I was like, that’s a great idea. That’s another great idea. There’s a third great idea. It’s like, like it was nothing, you know, it’s fine.
[00:20:04] It’s what I do every day. It’s cool. So I love it. Those are great ideas. Those are really thoughtful, very thoughtful ideas, I think for that. So I have two more questions. The first is. What gives you hope when it comes to creating a more inclusive healthcare system?
[00:20:22] Monique Stamps: Being invited to the table on platforms like, like this, you know, being a part of this podcast means so much to me.
[00:20:31] And you know, that you’re giving voice to disability advocates and women’s health advocates like myself you know, gives me hope. And if as far as like, like policy wise last year when the Health and Human Services approved new regulations to make medical diagnostic equipment more accessible
[00:21:01] And improve communication access for deaf and hard of hearing patients and, you know, requiring disability training for providers, it felt like real progress. So I’m just hoping. Even with that hope, I’m just hoping that things don’t go back. But even if they do, the determination and fight that people with disabilities have in us gives me hope.
[00:21:29] We never stop pushing for change. So that alone gives me hope.
[00:21:35] Adam Walker: I love that. That’s beautiful. All right, last question. If our listeners take away just one message from today’s conversation, what should it be?
[00:21:46] Monique Stamps: I’m gonna go back to the mantra from Independent Living Movement. It stays with me all the time.
[00:21:53] It’s nothing about us without us. Ooh, wow. Yes, it is that, that it is a old mantra. And if you’re outside of the IO movement. Not many people hear it, so I’m glad I’ve,
[00:22:10] Adam Walker: I’ve never heard it, but it took me a minute like it, like I had to think about it and then when it hit, it was like, oh man, that’s really powerful.
[00:22:18] So, wow. I love that.
[00:22:20] Monique Stamps: Yes. Yes. You know, check out the you know, the IO movement, you know, do some research on, you know Judy Human and Ed Roberts, who’s the founder the father of the IO movement. Creating spaces for people with disabilities to, to advocate for accessibility in general and right.
[00:22:44] Equitable services. So it’s basically, if you want e equity in healthcare, you must center the voices and leadership of people with disabilities every step of the way. So nothing proud us without us.
[00:22:57] Adam Walker: That’s right. I love that. I love, that’s so great. Well, Monique you’re an excellent podcast interviewee, and I love the work that you’re doing.
[00:23:05] It’s so, so important. Thank you for the work. Thank you for joining us on the show today, and I’d love to have you back again sometime.
[00:23:13] Monique Stamps: I would love to come back. Thank you for having me, Adam. This was awesome.
[00:23:22] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan g Komen. For more episodes, visit real pink.komen.org. And for more on breast cancer, visit komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.