Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
And I’m Lori Saux and today we’re joined by Abby Brandon-Livits and misty Adams from the National Down Syndrome Society and the New York City Buddy Walk.
0:42
The New York City Buddy Walk is kicked off with a one-hour video of photos of individuals with Down syndrome that is played in the middle of Times Square. Today, Misty and Abby are going to talk about those events. The Times Square video has been happening since 1999. We talk a little bit about how that’s changed and the impact and just the celebration. This is a conversation and reminder of the celebration of our community and ways that you can participate.
1:26
The video will be shown on Facebook Live during the event. So make sure you go to their Facebook page and follow them. Also follow them on Instagram. And the link to the National Down Syndrome Society will be in our show notes.
1:40
So welcome, Misty and Abby.
1:45
Hello, Abby. Hello, Misty.
1:47
Hi, how are you?
1:49
Good. Good to see you. Thank you so much for coming on today. Of course.
1:54
Thank you for having us.
1:56
Good morning. It’s really so wonderful to meet you ladies. You tell.
2:01
Well, we aren’t saying good morning, but it is the afternoon for you. But it was Taylor Swift’s first night in L.A. and the girls went out and so for for Sophia’s birthday.
2:12
Oh my gosh, did you love it?
2:15
Oh my goodness, it was so amazing. It’s her first, she has never been to a concert. And so oh my god, it was her first concert. And she’s turning 16. So it’s her 16th birthday. That was her her birthday present. And it was so it was amazing. It was you know, it was it was kind of it was one of the things I love is like she’s a very positive person who seems to be very generous in spirit, and very uplifting. And it’s so nice to know that that element is out there reaching on such a mass scale, especially, you know, a lot of our girls that are coming up and showing them a woman power last Yeah, a lot of women power. It was it was good. I said you know people will always ask you what’s your What was your first concert and this is a pretty good one. This is a good one that hard to top that it really Yeah. It was amazing. It was amazing.
But we won’t make this into a Taylor Swift hour. (laughing)
3:14
No, I came across you guys on social media on Twitter, specifically about the New York City Buddy Walk. And I’m so happy you guys are here. But maybe it would be best if you each introduce yourself just told us a little bit about yourself and and how you work with the buddy walk and? And NDSS
3:32
Absolutely. I’ll go ahead and start. I’m Misty Adams. So I’m the manager of our community of that. With that. I manage the national buddy walk program so that all buddy walks that take place across the United States, as well as the Time Square video that takes place in conjunction with the New York City Buddy Walk so I get the honor of looking at all of the amazing photos that come in and the hard decisions of choosing those that are going to be in the video. But then I get to make the connections with all the families do so it’s super super amazing. But there’s there’s other aspects to my job. But those are those that are related to the Buddy Walk
4:22
and the deadline for the photos past for this year. But it’s something that people can look out for for for next year. Do you on talk about that?
4:31
Yes. We will open up submissions it will either be late March or the first of April in that is when submissions for the 2024 Time Square video will take place. And we usually will leave them open leave it open for at least a couple of months, two or three months. Kind of it depends on when our buddy walk is going to be and then to allow time for us to get everything in order but this year at the deadline was As the first of July, so did usually fall around that timeframe.
5:04
Maybe you could talk a little bit about that Time Square video.
5:08
Absolutely. It’s like my favorite thing to talk about love and love. So this amazing event started in 1999. So we’ve been at it for a while. But we have two screens, and Times Square and the father deputy square. So they’re placed right above the Dos Caminos restaurant. And so we have a little over 500 photos that are displayed within an hour timeframe, we it takes place from 9:30 to 10:30am. Eastern Time, as it plays into being the kickoff for the New York City Buddy Walk that we have, like the 500 photos that are displayed on those screens within that hour time. So each photo gets somewhere along the lines of like, six, seven seconds. And so that families get they travel from everywhere to come and see this presentation take place. I’m thinking back to last year, I mean, that place was packed of all the families and I tell this story, I looked over at one point, and there was an older lady with Down Syndrome and her photo was up and the tears were just coming down her face that like I was like, This is why we do this. But it has such I mean, who can say they get to have their photo displayed in Times Square, not many people. And so it’s such a huge of that. It’s so big for our community, because, you know, it’s not just our community that they’re walking around Times Square, there’s so many people that are drawn in during this event that gets to come and see these and then it sparks up those conversations and just a unique way to advocate for our community.
6:57
Has it always been an hour?
6:58
Yes.
7:00
That’s a fantastic.
7:02
Yes, yeah. And we have amazing in kind Donner that’s cleared channel that donates the screens for us to use. I’m so so it’s such an amazing opportunity. And they have been such a huge supporter for all of these years.
7:18
How have you seen it changed since 1999? Because as far as Down syndrome, and the advocacy and a you know, all of these milestones that we’ve made, as a community have have really started to change the narrative of Down syndrome, what are some of the biggest changes you’ve seen since you started the video so many years ago? Well, there’s definitely
7:39
a lot of older individuals that are present in the video, which was not as common, you know, many years ago, so. And then we see, I get, we get so many submissions of people that are on sports teams in their football uniforms, or basketball uniform, their cheer uniform, that sort of thing. Or we have some that are artists, and so they’re, you know, there’s photos of them painting their artwork, and you know, all sorts of things that you just, you know, several years ago, we didn’t see how in the world, but now, all of that is being displayed in and it’s you know, it’s there’s a lot of them to which, which it’s amazing. So I guess to answer your question, we just, we’ve seen it evolve to where it’s not just that, you know, that just photo of a cute face. Now, it’s like, the impact that they’re having on the community, as well. And you can see the evolution of inclusion taking place through these photos.
8:35
Mr. You, you got me with that you’re getting pictures of older individuals. I think that’s so important. We have a lot of conversations about some of the messages that were sent to parents, you know, when they get the diagnosis. And, and that was that’s one of the biggest fears I think parents have when they receive a diagnosis of Down syndrome, because they’ve been told this message of, you know, like, a great chance of more morbidity and, and I think it’s, that’s, that’s so important to understand just how probably
9:08
the second or third thing I remember Googling, like, you know, like life expectancy, you know, these are the worries that you do, as a parent that here’s get on the internet and just start looking at this. The stats and stuff and, and it’s, you know, part of it is is not not reality, you know, I mean, do you see adults, you know, but in your mind as a parent, you just have this, you’ve already gone, you know, 50 years in the future. And yeah,
9:34
one photo in particular comes to mind and it was, it is an individual holding a six and a zero balloon, because he had celebrated his 60th birthday. So life expectancy is definitely increasing.
9:49
And that’s amazing because it just changes the message. It changes it from the community in a dynamic way. And I think that’s really important for parents to understand. cuz I feel like when we’re given the diagnosis, that all of a sudden we’re holding, all of these things that don’t really belong to us. And it’s nice to be able to let go of some of that. And actually, you know, in enjoy your child’s life, it’s really hard when you have a child that is, you know, brand new or even before they’re born, and then all you’re worrying about is when they’ll die, or how sick they’ll be, or the limits of their life that you think that gets that joy gets robbed sometimes. And so the moment you start thinking about, that’s all you’re thinking about, and you don’t like the difference between, like, what we’ve gotten to experience with our daughter, and what could have been placed on us with our son is so different. So it’s nice that there’s this. I think when people see those photos, they can take a breath and be just like, oh, well, maybe, maybe that’s not the truth of it, you know?
10:56
Like they can see their future. Yeah. And those photos.
10:59
Yeah, that’s it. You can see the future, a future, all of it.
11:04
Abby, would you like to introduce yourself?
11:07
Absolutely. My name is Abby, Brandon limits. I am the manager of special events at the National Down Syndrome Society. So I manage our larger fundraising events. So the largest of which is the New York City buddy walk. So the New York City buddy walk along with the Time Square video is really a celebration of the Down Syndrome Community. And so the flagship buddy Walk takes place in New York, but we have buddy walks that take place all over the country.
11:39
What’s the history of the New York City buddy walk? Is that kind of where everything started?
11:44
Yes. So that was the first buddy walk that was held all the way back in 1995. And it’s grown nationwide. Since then.
11:52
How long have you been working with NDSS?
11:56
I’ve been with NDSS for just over a year and a half now.
11:59
And what brought both of you ladies to work with the National Down Syndrome? Do you have individuals in your life with Down syndrome.
12:08
So I don’t have a personal family connection. I worked for a local affiliate, the Down Syndrome Association of Greater St. Louis. I worked there for almost four years previously. So that was really my connection and introduction to the community. And I loved it.
12:27
I actually have an adorable little 10 year old girl named stay late that has Down syndrome. So that was my introduction into this amazing world. Um, when she was born, there were a lot of health complications that required me to leave my job. So I became very involved with our local affiliate through that was introduced it to NDSS got involved with them and a lot of activities, managed our buddy walk our local buddy walk and then started getting involved in some of the charity racing events. And then, a few years ago when the buddy walk manager job came open, and it was a remote position I was able to apply for it and I tell them they’ll never be able to get rid of me now it’s it’s like my dream job.
13:24
And even though you’re not in in NYC, you do go for the event. You You go do you both go to to New York for the buddy walk and the Time Square presentation we
13:34
do we do we it’s a it’s about a three day affair for us of the getting ready for it and getting everything set up and day out, but we wouldn’t miss it for anything.
13:48
What are some of the changes you’ve seen in the last 10 years?
13:52
Well, the buddy walk was actually like really my the very first if there are anything that my family and I had participated in that was solely focused on the Down Syndrome Community. And I have pictures I look back on. It was amazing. We had a team of like 80 people that came out to share the support. And that was also my first introduction into fundraising. Like you know, I never really edited the fundraising before so but I fell in love with both that we have definitely seen we’ve seen a lot of growth in the buddy walk program for sure over many years. COVID was a hard hit for everything for I mean for everything but obviously for the buddy walk as well. Or the buddy walk program in general. As for the New York City buddy walk it was virtual for a couple of years. And so Tom square video also is still continued on still had it in in Times Square obviously we didn’t have the amount of families that were able to come and see their loved One on the screen in person. But we did continue with a tradition. Last year was our first year back in person with the New York City buddy walk. And it was everyone was so excited to be back we had we had an amazing turnout of individuals. And we learned a lot from COVID that we were able to implement and to our walk programs now like we do offer those that you know, you couldn’t you can participate in a buddy walk, especially in New York City buddy walk no matter where you are, you know, we that was something that we definitely learned, you don’t have to be there in person to provide that support. I’ll pass it off to Abby, that she can kind of explain what she’s kind of she’s, she’s more into the logistics of all the New York City buddy walk than I am. So I will let her kind of share some of the stuff that she’s been.
15:52
So COVID changed a lot. And I am a career fundraiser and Event Manager. So while I’ve done a lot of work in the Down Syndrome Community, I’ve worked for other organizations as well. And there was such a shift when the pandemic happened of not only how we fundraise and how we organize events, but why people want to get involved and what really matters to people. And people really missed out on that connection when we were all so isolated for quite a while. And people are not only just looking to give money or time to worthy causes, but they’re looking to really be a part of something and be a part of something that is bigger than ourselves. So I think that that’s really what draws people to support a buddy walk and come out. It is more than just having a loved one with Down syndrome. It’s wanting to be a part of this special thing for the community and make a difference make things better. I feel like that that’s just a shift that I’ve noticed, from a fundraising perspective, from an event management perspective, that’s probably the biggest thing that I’ve seen.
16:59
Can you talk about the buddy walk? Like what how, where does it start? Where does it in
17:05
this year, we actually have a brand new location for the New York City buddy walk. So it’s going to take place at the Nonnberg bandshell in Central Park. So for those who are familiar with Central Park, it’s near the Bethesda Fountain, and it’s pretty close to the sheep’s meadow area as well. So it’s a really iconic Central Park landmark, the bandshell is over 100 years old. People like Martin Luther King and John Lennon have spoken on its stage. They perform orchestra concerts there, it’s a really exciting place. So that is where all of our fun events take place. We have carnival games, we have a play area, we have live entertainment. And I can say most importantly, we have a dance party. And the walk begins at the bandshell. And it takes off down the iconic Central Park Mall and literary walk. So if you’ve seen a movie set in New York City or Central Park, you’ve probably seen a scene shot on the Central Park Mall. So it’s a really cool, really beautiful location, especially in September. So it’s really exciting. We were previously at a place called the great hill in Central Park. It was hosted there for many years. That’s also a very beautiful location. It’s further north. So it’s not as well known, it’s a little bit more secluded. So this year is location is really kind of in the middle of Central Park. And it’s more well known, it’s larger. So we’re very excited to be there.
18:34
How’d you get that change to be someplace so much more visible?
18:39
Thorough, yeah, it was kind of a mix of things. But as we were communicating with the Parks Department, as we were looking to plan this year’s event, we realized that we had started to outgrow the previous location. And we needed a little bit more space. So this is providing that this is also a much more accessible space. So it’s going to be a lot easier for people to come and enjoy themselves and participate in the fun.
19:04
Yeah, that’s such an amazing part of Central Park too. I think of the sheep’s meadow. I remember this is years ago, but going there and at certain times, we will go in there and you just you’re just supposed to be quiet when you go into the sheep’s meadow. And it’s just a beautiful place. I think of like, Simon Garfunkel had a concert there. I mean, like there’s been a lot of big events but so happy that that’s the part that because that’s a very popular area of the park to like, you’ll have a lot of tourists that maybe didn’t even know that there’s an event going on and it’s just kind of maybe stumble upon something you know how many people go to New York City not knowing exactly where to go and you know, maybe they have an itinerary but things can change and they they walk upon you guys and get some information and learn some things and have a good time.
19:54
Exactly. That always happened in previous years. We’d have people come up to the walk and ask You know who we were and what we were doing? And I think we’ll have a lot more of that this year.
20:04
I assume you’d have that at times square as well, you know, I mean, and also, I don’t believe we mentioned that the Time Square, part of it would be streaming as well on on YouTube, is that correct?
20:18
It will be on our Facebook Live. And so yes, and then we will also have a professional photographer that will be set up, and she takes photos of all the photos that are on the screen, so anyone that is unable to attend, they will get a professional photo. And of course, all of those that are able to attend will get one as well. So we tell the families like you focus on getting your child there with the photo in the background. And we’ll put we’ll take we’ll focus on just getting that photo on those screens. For you and get that to you.
20:55
Are there any places like for accommodations that support both events? As far as you know, you can put like in a code sometimes for different hotels or any is there anything like that?
21:06
We do have a hotel room block at the Westin New York Times Square.
21:10
Oh, great. Isn’t is there like a code or something that people put in? Or?
21:15
We don’t have a code, but we do have a link to the room block?
21:18
And that’ll be on your website? It is yes. And it’s on the National Cancer Society website? Or is or is there specific buddy walk website that you go to?
21:28
We have a specific website to register for the New York City buddy walk that is linked on our main website, though?
21:36
Well, I’ll put that in our show notes too, so people can make sure they get to the right place.
21:41
I’m really curious. It’s very exciting that it’s in Central Park. I’m very, very exciting that it’s in Times Square these videos. You’ve been there for 1010 years now, Misty, and you were there last year, Abby? How does it rock the community? Like how like, what is the, you know, like you were saying people are out and they don’t know that there’s a buddy walk. And they come across the Down Syndrome Community in moss? What are some of the experiences that you have? And I asked because when Liam was little I remember he had we were looking at schools. And we knew that there were people with Down syndrome in our community. And we were like, where are all the kids with Down syndrome? Like, we know that there are other people with Down syndrome? Where are they? You know, and 13 years ago, it wasn’t. People weren’t as, as visible there. You know what I mean? It was if you go back historically, actually, you know, families, you talk about someone who was 60 years old, what that experience was for them, like a lot of times children weren’t brought out into the community. And I’m just curious.
22:55
And also there, there weren’t you know, ads or commercials?
22:58
No, it’s so amazing. Just all the just adds in the visibility. And I’m just curious what what is that energy like when you’re there,
23:09
it’s it’s almost a little bit different to describe it is so special, it is so electric, it is truly an incredible thing to be a part of where people with Down syndrome are celebrated for exactly who they are because of who they are. And absolutely everyone deserves that everyone deserves to feel that way. It’s a really incredible thing to be a part of. And the buddy Walk is a hugely important advocacy event. For the Down Syndrome Community. It’s also the most widely recognized public awareness program for the Down Syndrome Community. So it’s only grown, especially as it’s gone nationwide. So the visibility for the New York City buddy walk is quite large, because it’s held in such a public place. But that extends far beyond this event. And far beyond just New York City.
23:59
I was gonna say for the Time Square video, it’s always great because you, you always are going to have people come up to you and say, What is this about? Or what are you doing? So it’s a great opening. But once those people start watching, they don’t leave until it’s over. Whether they have a connection or not. But usually they’re moved by the end of it, and they want to know more like, please give us more information on what you’re doing. Where can we find you or they’re, they’re already following us on social media before they ended the event. So it is great. Last year, there was a concert a religious concert of some sort, um, going on there in time squares. Well, well, they got so involved into our event as well that they started giving like shout outs and during, in between their songs of you know, until people you know, the follow us and that sort of thing. So it is so impactful of what we’re doing. And I think that visual harshly Times Square video is so, so big for those that are coming in. Because, again, like I said, How often do you get to see photos flashing on these jumbotrons in the heart of Times Square as well. And so people are very, very interested in that, as you mentioned before, I feel like probably not ti 99, people were even more surprised to see an individual with Down syndrome up on a jumbotron. Now, it’s not I mean, it’s a more common thing now are you used to seeing 500 gorgeous faces shot, you know, scrolling through, no, so that’s going to get your attention. But I do feel like our community, it’s not a shock to people as much anymore, you know, when they’re seeing as, and so that individuals with Down Syndrome and the downstream community are becoming a more integrated part of the community as a whole. But it is a great, great experience. And, and those that come in, you know, they’re like, not, we have some that follow us to, to Central Park after the Time Square video, because they want to come and take part in the event.
26:12
You had mentioned earlier how inclusion itself has affected the world and, you know, not just our community, but I think about these photos and, and the walk as well, when people, you know, see this community together. And I think about the pictures I had, maybe in my mind or pictures I saw of people with Down syndrome when I when I was younger, even you know, as a young adult, and, and they weren’t positive pictures that I saw, you know, I saw pictures of people that not only weren’t representing their full self, but because of how they were oppressed, basically, but also not part of our community. You know, these were photos of other people of people that, oh, that’s them, you know, and, and this is such a, you know, New York City is such a unique place and a beautiful place. And to have this community, in the heart of, of the city, and shown in front of all these people in such a positive light and showing someone that they’re at their best, you know, and showing what they what they are and who they are, and that they’re part of the community is. So I mean, listen, I haven’t seen the pictures, I’m impacted by it. But I can imagine how people can see walk into an hour presentation and say, I can’t leave until this is over.
27:52
I think that events that are so public, like the Time Square video in the New York City, buddy walk, they really do shift public perceptions for people of what life is like for individuals with Down syndrome, and how different it can be for all people, you look at the time square video, and you’ll see someone who was a star athlete or an artist and you come to the New York City buddy walk and you see people with Down syndrome, who are singers, and entrepreneurs and excellence in academics, you know, you see all of that. And I think that it has such a positive impact on the community at large on people who are not associated with the Down Syndrome Community, and it makes them want to be a part of it.
28:34
I think what Stephen was talking about was the stereotypes that were propagated, the images that really are burned in people’s minds are from the when those institutions were revealed, you know, and what happens to a life that has to experience segregation and dehumanization. And they took that, and that was the image that was burned into so many people’s minds. And that is really what is behind a lot of the challenges that the community has. And so just like we are taking back the narrative by telling our stories, by changing those images that because if honestly, if you’re not in this community, you don’t experience its greatness, like, I mean, you just don’t not yet. We’re starting to not beyond that. They’re like that pandering kind of awe and pity, which is, which doesn’t even belong. In a sentence with your child has Down syndrome. I want no parent to ever experience an AA or an I’m so sorry, ever again, that that just that isn’t something that needs to be present. And I think that all those sentiments come from this archaic story that was told these images is at that were put upon us to kind of push that whatever that agenda was that initial agenda that happened so long ago. And by by changing those images in, in people’s minds, there were people who don’t know that somebody with Down syndrome can actually play football can actually run a race can actually swim 100 What is 100 meters? Is that the swimming term? Like, I don’t know, swimming? Like, do you know what I mean? Like people
30:34
pee. This is an image that people will think about when they think about Down syndrome, you know, just like, yeah, I reflected on the pictures I had, in my mind. I don’t even know where those pictures came from. But the the, obviously, I had experienced something to get that. And now these people, people, maybe their first introduction, maybe, maybe they know about Down syndrome, but this is something that will carry for the rest of their lives of the image of what Down syndrome is or someone with Down Syndrome and, and what they can do,
31:04
and that it’s equal, like, there’s not like, I think about Krisna nicot, and that he ran an Ironman and I think most individuals can say, I’ve never run an arm. Yeah, right. That’s like really hard. And to to have to have things like that, where it’s just like, oh, well, it’s, it’s that equality. And it’s, you know, I longed for the day where we were, we don’t have to say, and wearing and our children are included. And you know what I mean? Because then it’s inclusion. And I think this is, this is such a great like your your photo in Times Square is epic, mind blowing, like something to be able to say that you’ve done that, you know, that you’ve had in your life, that experience and that experience for a family to say, Yeah, we’re going to New York, because, you know, our, our brother, our uncle, our best friend, our sister, our brother, their picture is being displayed in Times Square. I mean, what’s so odd? What’s all about that? It’s, it’s amazing. And these opportunities are just, I think, especially New York, right? Especially New York City. It’s like we all we tune in a New Year’s day to see Times Square. I mean, you think I always think whenever I’m somewhere I think about who’s walked there before. And this is like not only who’s walked there before, these are the actual people that are walking there and changing the path of this community. And in a very big in a very big way.
32:47
Well, Abby, could you take us through maybe like, what the buddy walk day is like, like how from start to finish how, how things go?
32:56
Absolutely. So as Misty mentioned, the Time Square video kicks off the day. So that is from 930 to 1030. Eastern time. And to make things easier on everyone, we offer buses, from the Time Square video location, to the New York City, buddy walk location. So we’ve so many people come in who are not from New York, not from the tri state area, and therefore not familiar with the city at all. So the buses are just a great option just to make things easy on people. They don’t have to worry about navigating. They don’t have to try to figure out the subway, if they don’t want to. So the buses will drop off starting at right around 11am. And that’s when the New York City buddy walk opens. So we have a lot of different fun things for people to do with the walk. We have a play area for children. We have arts and crafts, we have some sports activities. We have carnival games, those are always a big hit. We also have live entertainment on stage as well. So we have live musical performances. And we also have, you know moments where we speak on stage. We talk about NDSS in the walk, thank everyone for coming. There are awards given out and people recognized. And the walk part of the New York City buddy walk is just under a mile. Like I mentioned, it starts down the Central Park Mall and literary walk. And then it basically just takes you like around the area where the bandshell is. So you got some really beautiful scenic views of Central Park as well as the neighborhood around it. And the walk starts and finishes essentially in the same location. You basically just make a circle. We give out metals and then we really conclude the New York City buddy walk a day with a dance party. And really that does not stop until the DJ packs up. People and even then people do not stop dancing. So it is really such a fun and special day and event us week includes around three o’clock. And I mentioned the buses earlier, we also have buses that can take people back to Times Square where everything started. You know, like I said, we really just want to make things easy on people and take as many challenges out of navigating New York City and coming to the event as we can. So yeah, it is, it’s a really special day.
35:24
And we’ll provide a link to the to register for the buddy walk, how many people do you have registered so far?
35:31
So far, we have I think, over 400 people registered Misty, does that sound correct. And we will have many, many more registered in the coming weeks.
35:43
And even if somebody cannot make it to New York for the Buddy Walk, they can still register and participate.
35:53
Absolutely, we have a walk at home virtual options. So you can register for that option. And we’ll send a t shirt and metal to you. So you still got to be a part of the fun and have a token of the New York City Buddy Walk.
36:08
You had mentioned how there, you’ve seen so much change and people wanting to participate? And I’m just curious, you know, for people who are listening, because if they you know, what are some of the changes that are made and advocacies that happen with the the fundraising.
36:23
So the New York City buddy Walk is a very important fundraiser for NDSS. So all proceeds, proceeds raised from the New York City buddy walk, directly benefit our mission. And they go directly to funding our three key areas of programming. So our three key areas of programming our resources and support, policy and advocacy and community engagement. And I really could go on and on about all of the incredible things that we are able to do because of people who support events, like the New York City buddy walk. But as far as resources and support goes, we offer a lot of free resources on a variety of topics for the community, such as health, wellness, education, financial, wellness, etc. And we have our adult summit conference coming up in November. So that addresses the needs of teens and adults with resources and educational opportunities for individuals with Down syndrome, families, caregivers, professionals. So those are just a couple of examples of things that we do and things that people can directly get involved with and support by participating in the New York City buddy walk.
37:39
So you mentioned three areas. And that was the resources that you just spoke about. And those are available on the website, there’s, they can find the resources and the summit that you spoke of.
37:52
Yes, so you can find all of the information about the resources about our programming, all of that is going to be on our website. So we have a resources and support tab, as well as a policy and advocacy tab on our webpage. And then under Get involved. That’s where you’re going to find information about all of our upcoming events, just kind of walk you through it a little bit where you can find it.
38:15
The policy and advocacy does it talk about the different advocacies as far as like the education and the rights of individuals with Down syndrome.
38:27
Yeah, so through our advocacy work, we empower people in the community to work with Congress, federal agencies, and as well as at the state and local level. So we do advocate on all of those different levels. And we advocate to develop and improve policies for the benefit of the Down Syndrome Community. And we also host an advocacy conference in the spring in Washington, DC, where we prepare people to go to Capitol Hill and take meetings with legislators and their offices to talk about policies that will improve life for the Down Syndrome Community.
39:07
Wow. That’s fantastic.
39:10
And all of that information is on the website. So people who are interested in there and they have that, that opportunity because I feel like as we evolve in age, you know, there are some responsibilities that can be taken on and I think like into individuals with Down syndrome, like when they get to be teenagers, they can begin to advocate and go out and understand the importance of advocacy in the community. And that’s very empowering. I think is apparent sometimes and Misty, you know, you maybe you can comment on this, like sometimes navigating those milestones. Sometimes we have to do it differently. And sometimes maybe that’s just imposed upon us. You know, I know with our daughter with certain you know, conversations it would be okay. We’re going to have this conversation, but how do we make it age appropriate. And I feel like sometimes in the community, there are conversations and I see it on the the boards that we don’t want to have, or don’t know if we should have or don’t think that we should have. And, and because we do that sometimes I think it denies our community and our and our children and our loved ones that ability to evolve and, and be empowered, you know, to tell their story. And so, as Steven said, Wow, I think it’s I think, you know, a bigger, like a real sobering real, like, we go out and, and we walk, and it’s so amazing to attend any of these walks, because you’re a community, right. And we and we always have these great conversations. And I think there’s something healing about sharing our stories. And the stories are changing, you know, and it’s fun, and a celebration. And, but then the part of that fun and celebration, the real good stuff that comes from having our photos in Times Square, having having people because that because that didn’t happen before. We weren’t I mean, our kids weren’t given heart surgeries, right? The exam that just didn’t happen. And you see, you know, to see the pictures there and to spark those conversations. And in Central, I mean, goodness, and Central Park. Hello. You know, it’s just, it’s just this great celebration. But then it’s like the putt. The reason we have this party is because it’s really making changes because we may be like, I’m used to like when Liam was born, there was a buddy walk, and we were celebrated. And Liam was celebrated. And we were encouraged to come out. But not everybody experienced that. And these fundraisers if you can’t make it, and these, like beautiful experiences, they’re at the core, and the foundation of making those changes and letting those voices be heard. Just to remember that just for people to understand that it’s a big, fun, fun party, but it’s also changing the world. And it’s changing the narrative. And it’s, thank you.
42:38
Now that just to build on that, like, I coming from the parent, the parent side of it, like I said, buddy walk was our very first event or experience in the Down Syndrome Community, and it was with open arms. But you know, I’ve grown to use that as an opportunity to invite people from my daughter’s school teachers, others students, like this is a way for you to come out. Because because we all know, if you go to a buddy, while you’re gonna have the best time ever, and you’re gonna leave with a smile on your face, probably more hugs than you ever thought you were gonna get and ready to do it again. So I use this is an opportunity like and invite people come, come join, it has made our transition into school so much easier, because these teachers, you know, they’re aware of look at all these possibilities. You know, we’re breaking those stereotypes, because because we’re seeing, we’re seeing people who are graduating high school, graduating college, that sort of thing, you know, that have Down syndrome. So you’re getting it, this is a fun way to get to show all of the abilities that our individuals have, and a way to break some of those barriers that we’ve had to face of education, employment, that sort of thing. So you know, it’s a great way to get business owners in that and weigh in as well and to have a good time, and then want to come back and be supporters too.
44:13
Sometimes we have to see it to believe it. You know, that’s just how society is sometimes and you’re putting out such beautiful visuals, and people will see things differently than they did before. And then also taking an adult and talking about Congress. So we can have more frank Stevens out there. So we can have people self advocating for themselves. And right there in front of people showing that we’re all together. We’re all we’re all the same. And we’re all here to celebrate.
44:48
And also I think what you just said Misty about your first buddy walk and how you’re welcomed with open arms. It’s such a gift for new parents. Because I think we can all be honest and say, right now still with the, you know, the heavy handed diagnosis, and some of the, you know, beliefs that still exist out there. And that’s when we took Liam to his first buddy walk, he was very, very, he was really, really young. But as a family and for our daughter, they just to connect, and to let your guard down a little, you know, we go through as parents, we go, we do, we have a bit of an armor. And it’s just a fact. It’s a fact, like, we’ve done 140 interviews, 150 interview, and it’s just a fact that we can, we can say openly now, because of society’s beliefs, because of our fight for inclusion in education, because of these things. Parents, we have an armor because of the way maybe our families take the news or things that are said, with, you know, the best in mind, they, they hurt, and they resonate. And here you go. And a lot of times, especially if you’re a new parent, you have parents have been doing it for years, you have adults with Down syndrome, you have all of this community and and I think you can like as a parent, you can take a breath, and you can relax. I don’t believe we get to relax that often. And you’re laughing, but I don’t I don’t think we get to relax that like really relaxed, really just let your hair down and just be like, yeah, today could be today could not be hard. And today could be hard. Or you can you can, you can have a conversation and not feel like that’s going to be the only takeaway and the way people see you forever. Because it’s like any parent, like you just get to just get to talk and connect and have fun. And see really cool things. I remember the first buddy walk we went on this family had because I think they were set designers, they, they’d built their their child loved pirates, and they had built a pirate ship. And it was this like this thing that they did every year, they would just make this just beautiful, grand, limitless celebration. And and I think it’s it’s, it’s, there’s so on so many levels, this is so great for the community. And if you can get to New York, if you can get to your local buddy walk. But if you can get to New York, and
47:24
we’ll have a watch on Facebook Live
47:27
what and what not, or, and watch and send a link to everyone that you know, you know, put it on your Facebook Live, put it on your Instagram and shout it out because it’s an awesome celebration. And, you know, I just I think we need to celebrate more, we need to not be so polite all of the time. And and suffer in justices when we don’t need to and call people in IEPs when those you know, were being denied, I put IPs in every because I want if this is the only episode that you listen to, I need you to know that you have a right to your child has a right to an equal education. I just need everybody to know that your child is equal, they have a right to the same education. So I shout that out as many times as I can. And there’s lots and lots of information out there. You can go to the NDSS website and probably get some really fantastic information about advocacy. And we just need to celebrate, we need to be celebrated and we need to celebrate you know, our kids are amazing. And I think about like for Liam sometimes I would get bothered because people you know that all oh and the pity. And if I don’t need to pay attention to that I need to celebrate the fact that my child is amazing, an amazing human, a human that people work to get there people go to retreats and do lots of lots of work to be kind just in a way that he doesn’t have that an agenda a kindness without agenda. He is smart he overcomes always challenges like when I see my son go for a run at track and PE I know every parent out there knows what their child did you go for a walk. And when we first started buddy walks were like why only a mile while only a half mile. But you know what think about celebrate that you remember when your child was born. You remember what the doctors told you? You remember how long it took that kid to walk. And you remember the blood sweat and tears that it took from your child and from your entire family and the parents that looked at you and didn’t think that they were going to get to that milestone and sometimes maybe you didn’t think they were going to get to that milestone, and then you go out and you walk. And that is the celebration. Because on the outside, they don’t understand the importance of this walk is that we did it. And we’re taking steps against everything that was put against us as parents, as a community, as our loved one with Down syndrome. And we’re doing it. And that should be celebrated. That should be celebrated. And I think both you ladies for everything, everything that you’re doing to help this community celebrate. So yes, go on to Facebook Live, share it with everyone, because this is the reality of this community. Register for the walk, participate virtually participate in your local walks. And just know that it’s the it’s the, the metaphorical step, and the actual step that we’re taking. And it’s change and its evolution. And don’t let anybody ever tell you that it’s helping your kid more than our kids are changing the world for the better. Right? This community is just, it just makes the world a better place. That is the truth of this community. Our kids make this world a better place. And so do you ladies, and I thank you so much from the bottom of my
51:23
heart. Thank you, thank you. I often say I’m not sure how I got so lucky to be brought into this community. But whatever I did, I’m glad I did it because it has been the best journey ever.
51:39
I mean, Misty really like before my son was born. And before I watched him, like all the work he did every single solitary milestone, the work that he did, inside of me, there is nothing that I cannot do after watching what he has done. And that is an immeasurable gift. The impact on Steven Sophia are for friends and our family. You know, as a human as a neurotypical, privileged human. There’s nothing that I can’t legitimately say I can’t do that. After, after watching my son do so many things that people said you can’t do.
52:28
I’ve done a couple of Marathon. Not that. I mean, in my head. I’m like, There’s no way. But I had my daughter’s pictures tied to my shoe strings. And I’m like, there were so many things I was told she would never do. And I watched how hard she worked there. So I know, I can do it. So every step I would look down and I would see her picture on the shoes and you know, got me got me through those. But I agree 100% That’s they, they are the biggest champions in the world. Because we see what all it takes to do the things that we take for granted that are easy.
53:04
Well, we thank you both for joining us today. It was just so nice to have you.
53:08
Abby, is there anything that you want to say before we go?
53:12
I’m just that we hope you join us in New York City. All are welcome. If you’re hearing this and you may not have a family connection, but you feel inspired to come please know that you are welcome to join us. And we hope that everyone who hears this will be inspired to join us in New York City.
53:31
Thank you so much.
53:32
Thank you so much. Oh my goodness. What a beautiful, beautiful morning. This was such a great, great gift. Thank you so much.
53:39
Oh, thank you for having us. Bye. Bye bye.
53:45
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If We Knew Then - A Down Syndrome Advocacy Podcast 