ANCOR Links: Season 1, Episode 11
Sasha Sencer
Hi, everyone. Welcome to the Links podcast today. My name is Sasha Sencer, and I’m ANCOR’s Director of Education and Intersectional Collaboration. I am thrilled to have this opportunity to engage in a conversation around Developmental Disabilities Awareness Month with my wonderful colleague, Alli Strong-Martin, who you all may know as our communications coordinator. However, I know Alli as the woman behind the scenes who makes a lot of our diversity, equity, inclusion, accessibility and belonging programming possible. So she is definitely my partner in all things that have to do with diversity change around here. So Alli, welcome to the program today.
Alli Strong-Martin
Hi Sasha and y’all, I am so excited that Sasha is on ANCOR Links today. Sasha is our, as she said, our Director of Education and Intersectional Collaboration at ANCOR. Sasha. You’re the one that is behind the strategy and you’re really leading ANCOR’s, diversity, equity, inclusion, and accessibility work, as well as our educational programming, like our annual conference and our webinars that happen throughout the year. So we are super excited that you are on today’s episode with us and that we, you and I are going to be talking about Developmental Disabilities Awareness Month.
Sasha Sencer
I love that we’re having this conversation, Alli, because while I have been in the diversity, equity, inclusion, and accessibility field for a long time, moving into the world of developmental disabilities was something completely new for me when I started at ANCOR. And I really had to learn a new language and new opportunities for how The work I had done in previous communities intersected. Even the word community has a different meaning when we are in the developmental disability space. So when people ask us, why are we talking to our audience today about developmental disability awareness month, I think a large part of it is that a lot of people forget about disabilities, particularly developmental disabilities when it comes to larger DEIA work. And we just want to make sure to raise people up and for them to begin to understand that actually all of the things that we’re working towards kind of are rooted in ableism. And so it’s important that we continue to talk about this month. Alli, you were the one though who educated me on where this month kind of developed and came from. So why don’t you kind of share with our audience about… What was the birth of the developmental disabilities awareness month and how does that link to the work that we do?
Alli Strong-Martin
Sure. So DD Awareness Month. So you might hear us throughout today’s conversation shortening developmental disabilities to DD. So if I say DD, it means developmental disabilities. So this awareness month is really it’s been an annual campaign and it’s led by the National Councils on Developmental Disabilities. And so every March is DD Awareness Month and this National Association of Councils on Developmental Disabilities, they come up every year with a theme. Last year’s theme in 2023 was called Beyond the Conversation, which I really liked that theme. And this year, for 2024, the theme is a World of Opportunities. And we can kind of talk through that a little bit more later. But I think that it’s really great that they kind of each year think about what is important to the community of people who support people with developmental disabilities. And they are listening to people with developmental disabilities themselves about what we should be talking about, what we should be raising awareness of from year to year.
Sasha Sencer
Alli, you said that last year’s theme really spoke to you. Could you share with us a little bit more about why that was such a powerful topic?
Alli Strong-Martin
Yeah, I think for last year’s theme of Beyond the Conversation, that really stood out to me as from moving what we do when our awareness is raised, right? So when we learn something new, What do you do after you have that conversation? So what do you do to move toward action? And I think, Sasha, what you really taught a lot of us is really being able to do that self-education, go and find the information. There’s so much information out there, but what we can be doing and learning to be better allies and supporters, whether it’s people with developmental disabilities or other groups who have been historically kind of pushed to the margins of society.
Sasha Sencer
That’s the benefit, I think, these days of being able to Google something rather than having to run down to your local library to do your research. So if you’ve been around with us for a while at ANCOR, you know we have a phrase, don’t ask it if you can Google it. And one of the questions you might be thinking about is, well, I’m new to developmental disabilities. What counts as a developmental disability? And there are all sorts of different types of things that happen as part of the developmental stage that can impact the human body that might lead to a developmental disability. But at ANCOR, we mostly work with individuals who have autism or are autistic, individuals who have a behavioral disorder perhaps a traumatic brain injury that happened prior to the age of 18. So if you’re a veteran who has gone off to war and unfortunately has had a traumatic brain injury, that’s not in the same category, believe it or not, when we talk about developmental disabilities. You may be somebody who has extra support needs when it comes to impacting day-to-day life. But usually it’s something that simply because of the way the human body develops, a person might need just a little bit more support in order to fully live their lives. So other things might include an individual with cerebral palsy, Down syndrome, fetal alcohol syndrome, and spina bifida. So wide range of different disabilities, but all get put together because it’s just a fact of life about how these disabilities develop within an individual as they age and grow. Alli, I have no idea if that’s accurate, so correct me if it’s not.
Alli Strong-Martin
No, totally accurate. And I think that, I think also the distinction you made between developmental disability and connecting it to other forms of disability is super important, but also knowing that developmental disabilities are distinct, although they could be co-occurring with intellectual disabilities or mental health disabilities or physical disabilities or sensory disabilities. So I think that it’s really important to also to acknowledge that overlap, but also the distinct nature of people who have different needs and like you said, support needs to be able to access their community.
Sasha Sencer
I think that’s a really great point that you make about the dual diagnosis. We talk about that a lot in our space, that often it’s just not one challenge that a person encounters but multiple challenges. And sometimes it feels a little weird for me to be talking as an advocate for individuals who have intellectual and developmental disabilities because we like to say nothing about us, without us, and in this case, you know, I think it raises a great question about what makes us qualified today, you and I sitting here and having this conversation, raising awareness about Developmental Disabilities Awareness Month.
Alli Strong-Martin
For me, myself, having multiple mental health disabilities, I have, in most cases, the power to choose whether or not I want to disclose that. And in most situations, I can move throughout the world and people can perceive me and they do perceive me as being non-disabled, right? And that gives me a certain privilege and people look at me and treat me a certain way because they think that I don’t have disabilities. And a lot of the people who our members support, who have developmental disabilities they do not, they’re not afforded that privilege, right? Like they, there are a lot of, their disabilities might be apparent or the way that they communicate might be so apparent that they are treated in a negative way or they are stigmatized, there’s a bias against them that doesn’t exist with me in the ways that my disabilities allow me to show up in the world. So I think. For me, that’s something that I always grapple with is that privilege that I have and how to best kind of leverage that privilege in different spaces that I enter.
Sasha Sencer
Alli, I really appreciate you sharing that and I will equal the vulnerability in the space by sharing in a second about, a little bit about my disabilities as well. But one of the things I want to link into is how so much has changed in the last 50 years when it comes to our cultural understanding about developmental disabilities and how our members are so crucial in the education of that drastic change, right? You know, I think back, I read earlier this year, Nellie Bly, who was a mud raker and a really early feminist journalist who basically institutionalized herself in New York City to understand what the conditions were like for individuals who were forced out of society and into these really unhealthy, horrible environments. And her bravery in doing that brought forth the conversation of what we’re doing is inhumane as a society. And today, I think a lot of us would be hard-pressed to envision a world where people are isolated. who have intellectual and developmental disabilities in that way. And I think about for myself, how lucky I am that that’s not a fear that I’ve ever had. I am very neurodivergent. I also have when my body isn’t working right, I lose the ability to use my hands and sometimes my feet and my legs. And I know the difference of how I felt on those days where my body wasn’t fully functional and it was a visible disability. And I also know how challenging it is to be in a space where like my brain literally will go blank. Like I will have been talking about something I’m a subject matter expert on and it’s like the world just erased. Somebody took an eraser and there’s nothing staring in front of me. And then there are days I make the analogy where it’s like swimming through sludge. Like I know if I can get through to the other side, I can find the knowledge that I need to be able to actively engage. And I know just how tired and exhausted I am on those days when that part of my body chooses to arrive. But so many of the people we work with, again, as you said, don’t have that choice of navigating between two different worlds. And so for me, the advocacy, of really coming in and saying, you know, people regardless of who they are and how their body chooses to show up in society should be able to engage with the world as best as they can. And if that requires us to slow down and provide some supports and services, who are we not to slow down and provide those supports and services to make the world a more accessible space? Because I know that when that has happened for me, It’s not just a sense of gratitude, but it’s the hope that I can live a good life and be included in a way that’s not always there. I’ll give you a silly story. I was having a flare-up due to medication post-surgery, and I was helping run a board meeting with some of our trustees for the Inker Foundation. And our chair of that foundation was so kind and generous, and so was the whole board, because I could not find the words I needed, and we were playing charades that day. And everybody’s guessing, they’re leaning in, nobody’s making me feel bad. And I felt included and nothing felt wrong about that situation because everybody knew that this is something that Sasha needs as extra support. And we care about Sasha. So we’re going to do this. So I think when we’re able to openly have conversations about these types of disabilities, it just removes the barriers to access. that don’t necessarily need to be there. And I think that’s why we’re sitting down and having this conversation about raising awareness and that all it takes sometimes is more support, whether that can be a person-based support, sometimes it’s financial support that we’re working at, but that everybody has the right to live a fuller life. And if we don’t talk about it, we can’t solve it.
Alli Strong-Martin
100%. That was like a mic-drop moment that Sasha just had. But I think that it ties into what we shared at the beginning that each year, Developmental Disabilities Month has a theme. This year’s theme is called a World of Opportunities. And on the online toolkit about how we can raise awareness and promote this month, a world of opportunities is described as celebrating people with developmental disabilities. but also working together to remove obstacles. And so I think, Sasha, what you were just saying is those obstacles, like you said, they don’t mean to be there, but they really have been put there in the way of people with disabilities, of people with developmental disabilities, to, again, whether those were intentionally or not put there, they have prevented people with disabilities from fully being valued in their communities, being able to even access certain parts of their communities. And I’ll read something that I found from an online writer. She is a neurodiverse, deaf writer, and her name is Mariah Nichols. And she was talking about disability as being this social construct that makes certain kinds of disabilities more acceptable. than others. And I think that for me and seeing and working with different people with disabilities, having disabilities myself, I think that people with developmental disabilities and intellectual disabilities are really still, even after all the progress that we’ve made, like you said, in the last half-century or so, I think still today people with I/DD are, and still remain at the bottom really of that disability hierarchy.
Sasha Sencer
That’s the type of stuff that really puts fuel in my fire, Alli. I mean, you want to get me, see me fired up about a topic? It’s when we start heading into these social constructs, whether it is about race, whether it is about disability, like who woke up one morning and said, somebody needs to be valued more than another human being. Like, when did we and why did we develop this concept that not every human being has intrinsic value to the world and that they have a special spot on this planet to give the best of the gifts that they have and to receive the best of the gifts that are out there to be given. And that work of trying to recognize with people what makes you so special. that somebody else doesn’t get the same level of love and care and value that you believe that you deserve is the biggest question that I think is out there. So that hierarchy just really like, makes me super fired up and angry all the time because yes, there are issues when everything is flat. Yes, you need leaders, but The reality is that every human being has something to contribute and is a person of value and should be treated as such. So that’s why we’re doing this work of saying, Hi, let’s talk about developmental disabilities. If we can’t talk about it, we don’t get to solve the stigma around it. Let’s, you know, make it known. Let’s speak its truth and let’s talk about what’s the best way to honor people in the way that they want to be honored. So I love that. That’s something you bring to the forefront. And it does remind me of some other work I was doing this week. There’s an activist out there who talks a lot about interlocking oppression. And we talk about that here a lot at ANCOR. And one of the things that I really loved in coming up with this conversation was a quote that she had reflecting on how we need to be asking more than one question, right? It’s not just how does ableism enter this space or how am I impacting developmental disabilities when we institute a particular policy or how am I impacting a person’s life? If ableism is showing up in a room, I bet you so is something like patriarchy. If patriarchy is showing up in a room, I bet you something like racism is showing up in that room. If racism is showing up in that room in some way, shape or form, I’m betting that some sort of discrimination when it comes to a person’s sexuality might be showing up in that room. So because oppressions interlock with one another, anytime that you are looking with a lens at a problem that is trying to ensure as much inclusion as possible. If you’re talking about diversity and you’re not talking about accessibility, you’re doing it wrong. If you’re talking about accessibility and you’re not talking about other forms of diversity, equity and inclusion, you’re doing it wrong. So this is why we have not just a DEI initiative, but DEIA efforts. And I think that’s also why we think it’s so important as NCOR to come out and talk about Developmental Disability Awareness Month.
Alli Strong-Martin
I love that so much, Sasha. And developmental disability awareness is not contained to a month for our members, for their staff. It’s an all year round thing, but there’s still more we can be doing to educate ourselves and to remove those obstacles that you and I have been talking about and that we know so many of our members. That’s their entire. mission, right, is to remove those obstacles and to be able to more fully support people with developmental disabilities and being able to really be included, feel included, and be valued members of our communities. So I think where I’m going with that, too, tying it back to that conversation we had a few months ago with Carli Friedman is the power that I think those of us listening who might be in the disability space, we have the power to, as Carli said, define and kind of champion those norms about what disability is, is disability or developmental disability, is this a bad thing, is it a tragic thing, or is it a normal part of human diversity? And so I think that these conversations that we’re having and just doing that work to look inside ourselves, even though we’ve worked with people with disabilities for 10 years, for two years, or for 50 years, there’s still more that we can be doing to raise our own awareness of those around us as well.
Sasha Sencer
You know, it’s interesting, Alli, that you say that because I get asked this question a lot. And the question is, Sasha, we do so much work around accessibility as service providers. Why do we need to do additional diversity, equity, and inclusion work? And I think it’s because we have sort of failed to realize that the roots of so many other types of discrimination are tied very deeply into ableism. So let’s talk about women as a weaker sex, not as able to do as much work, not being able to contribute to society. Now, those are not my statements. Those are statements, obviously, from individuals who believe that there are differences in roles and power, and that those who are stronger can produce more outputs are better members of society. That’s ableism in its thought process. Or when we look at racism and we assign certain qualities about that race is more intellectual, that race does more hard work and is stronger. Like that is all linked into the ability of a person to be able to do a particular type of work, right? So when we look at those things, I think… The reminder is, again, to those interlocking areas, if you’re working on eliminating racism, you are working on eliminating ableism. If you are working on eliminating sexism in your workplace, you are working on eliminating ableism. If you are working on allowing people to show up as their true authentic selves, you are eliminating ableism. So all of the work that we are doing is directly linked to the work that we do to make a more inclusive world. And I don’t know anybody who can’t get on board with ensuring that individuals with intellectual and developmental disabilities are not seen and valued as important members of our society. So I think that’s just one way of framing it and remembering it that all of the work we do, no matter what letter you put on it or what ism you attach to it at the end, when you fight the ism, you’re fighting ableism. And I think that’s just really important for people to remember.
Alli Strong-Martin
Sasha, that was it. I was snapping my fingers in agreement with everything you were just saying. And I think that is… so important for, I’m gonna be thinking about that as we move on from this conversation. We move forward in our weeks and I just, and then as we move forward into March as Developmental Disability Awareness Month.
Sasha Sencer
Alli, if I have learned anything about the people that we interact with is they love good talk, but they love solutions even better than good talk. So, I think we have a couple of ideas we can throw about ways for people to be proactive in raising awareness in their own organization. So the first one that I’ll throw out on the table is, again, if you’ve got questions, make sure that you’re being curious, that you’re learning, you’re Googling, and that you’re realizing that not all barriers are just environmental. There are all sorts of barriers that prevent people from having access. So start with asking the question about… What does it mean to have an ableist society? What does it mean for an individual to have developmental disabilities? What can I do to help remove some of those barriers? And that is all sorts of great work that you can begin to do on your own. There are so many organizations and resources out there. And I would encourage you when you’re looking at organizations to at least look at three different perspectives, because no one perspective is going to offer you a solution to everything. So learn and build up your own skills and figure out how you’re going to approach making sure that people with intellectual and developmental disabilities and developmental disabilities, in particular, this month are included in your world.
Alli Strong-Martin
I love that. And we will compile, I can think of a few resources as you were just sharing Sasha that we can definitely share in the show notes as well as we’ll link to the 2024 Developmental disabilities awareness month poster and the different social media graphics that we can be sharing with our social networks. And we hope that you’ll just also, beyond social media sharing, be having some of these conversations or something that was thought-provoking to you. As you were listening to all of the finger-snapping comments that Sasha made, have those conversations with your coworkers, the people that you work with, and be talking about these questions, maybe even beyond your work, in your social circles, at the dinner table, you know, having conversations about the work you do, the people you support. the barriers that they face, but also the barriers that we all can be working to, to break down.
Sasha Sencer
You know, Alli, the other part of having those conversations is so many people get so scared about jumping into conversations where they feel they’re not the subject matter expert. Well, everybody is a subject matter expert on what it means to feel as if you have human dignity. And at the end of the day, that’s really what we’re advocating for. is that everybody has an opportunity to live a life full of dignity. So even if you don’t think that you’re a subject matter expert on spina bifida, you can certainly be a subject matter expert that the people in our world and whether it’s our workplace or community that we live in should all have the right to live a life of dignity.