S4 Ep_034 How Down Syndrome is Excluded from Disability Inclusion, with Emily Mondschein, Executive Director, Gigi’s Playhouse Buffalo,Pt.1
Emily Mondschein, Executive Director at Gigi’s Playhouse Buffalo, joins us to talk about her urgent and trailblazing work in disability inclusion. She shares how her experiences as a special education teacher, and later, parent of a child with Down syndrome, led to her national advocacy work for equitable access to education for the Down syndrome community. In Part 1 of our interview, we discuss:
How the fight against disability exclusion and misinformation begins during pregnancy, and what this reveals about the culture of obstetrics and women’s medicine;
The ways that our limited understanding of multiple disabilities prevents us from providing effective supports to individuals with Down syndrome;
Why access to education and literacy for the disability community is limited by a lack of educational models for true inclusion;
Why discrimination against the Down syndrome community is also discrimination against the Autism, Deaf and Hard of Hearing, Blind and Low Vision, and other disability communities;
How Gigi’s Playhouse, a dedicated space for the Down syndrome community, works as a bridge for improved community inclusion and disability awareness.
Bio:
Emily Mondschein is the proud mother of two boys, one who was born with Down syndrome. She has a master’s degree in education and has founded 2 not for profits that serve individuals with Down syndrome. She currently serves as the Executive Director for GiGi’s Playhouse in Buffalo, New York. She is a member and leader on multiple councils, both local and national, that support individuals with disabilities. Emily works alongside medical providers to ensure that patients with Down syndrome are receiving optimal medical care. She also provides education to clinicians around best practices for delivering the prenatal diagnosis. Emily is passionate about inclusive education and supports schools in providing these learning environments. She has advocated to congress on behalf of individuals with Down syndrome and is currently working on legislation to better impact the lives of the disability community.
“I started to reflect on what my past had looked like during my pregnancy, and decided I really kind of wanted to hit the medical scene and try to impact some change on how that pre and postnatal diagnosis is delivered, as well as the conversation around Down syndrome.
And also, as a former educator, I wanted to sort of start hitting the ground with local school districts, talking about what inclusion should look like, as opposed to what I remembered it looking like when I was actually the inclusion teacher.
”
-Emily Mondschein
Transcript
Season 4, Episode 34 (Pt. 1 of 4) How Down Syndrome is Excluded from Disability Inclusion, with Emily Mondschein, Education Advocate & Executive Director of Gigi’s Playhouse
Emily Mondschein:
I started to reflect on what my past had looked like during my pregnancy, and decided I really kind of wanted to hit the medical scene and try to impact some change on how that pre and postnatal diagnosis is delivered, as well as the conversation around Down syndrome.
And also, as a former educator, I wanted to sort of start hitting the ground with local school districts, talking about what inclusion should look like, as opposed to what I remembered it looking like when I was actually the inclusion teacher.
[Rhythmic sounds of electric train pulling into station]
[Subway chimes arpeggio played on mandolin]
Cevan Castle, host:
Welcome to Towards a Kinder Public, a podcast dedicated to designing kinder public space that better meets our interconnected needs. I’m Cevan Castle, and along with Annie Chen, we are Kinderpublic.
This episode is continuing the 4th Season of this podcast, which takes a close look at the interweaving of social, spatial, and organizational exclusion.
Today we are in conversation with Emily Mondschein, who is here to speak with incredible openness and clarity about her work on disability rights, and disability inclusion for a diagnosis that is incorrectly characterized, often misrepresented, and under-supported by our disability frameworks, and that is Down syndrome.
It’s not well known, but important to learn, that Down syndrome overlaps with many other disability communities, including the Deaf and Hard of Hearing, the Blind and Low Vision, and diagnosis of other neurodiversities, including Autism. Most significantly, many individuals with Down syndrome do not receive supports for these additional disabilities. One example of this comes up early in our interview, where Emily and I discuss the impact on children with Down syndrome of not receiving support for hearing and vision differences in school.
Emily Mondschein is at the forefront of the disability inclusion, education, and supports movement in the United States. She is also the proud mother of two boys, one born with Down syndrome. She has a master’s degree in education and has founded 2 not-for-profits that serve individuals with Down syndrome. She currently serves as the Executive Director for GiGi’s Playhouse in Buffalo, New York. She is a member and leader on multiple councils, local and national, that support individuals with disabilities. Emily works alongside medical providers to ensure that patients with Down syndrome are receiving optimal medical care. She also provides education to clinicians around best practices for delivering the prenatal diagnosis. Emily is passionate about inclusive education and supports schools in providing these learning environments. She has advocated to the United State Congress on behalf of individuals with Down syndrome and is currently working on legislation to better impact the lives of the disability community.
Many of our listeners may know, I am also the parent of a child with Down syndrome, and Emily provided educational guidance and support to my family, and that’s how she has some familiarity with my child and our situation.
I hope that this conversation on disability inclusion feels warm and supportive and empowering to other families in our community, and gives you helpful tools, like Emily has given me. I hope that it is informative for advocates working on this urgent issue.
Please be aware that there is discussion around receiving a discriminatory prenatal diagnosis, and Emily shares some of the disturbing defamation and misinformation associated with her pregnancy experience and prenatal diagnosis.
I am incredibly honored to share the first episode of our conversation with Emily Mondschein. Thank you for joining us!
[Subway chimes arpeggio played on mandolin]
Cevan:
Hi!
Emily Mondschein:
Hi! How are you?
Cevan:
Good, thanks. How are you?
Emily Mondschein:
Good. Nice to meet you.
Cevan:
It’s great to meet you, face to face.
Emily Mondschein:
Yeah, right? This is really amazing, all this work you're doing. This kinder space… I was looking into it. It's really, really a cool concept.
Cevan:
Thank you! Thank you. I think that part of my first… strong feelings about public space probably came as a mom… a pregnant person… <laugh> trying to navigate work space, and transportation, and then…
Emily Mondschein:
Oh wow.
Cevan:
…Being out in public space with an infant and recognizing that there's actually no provision of space other than possibly a changing table in a public bathroom <laughing> that is for an infant, or for a mother who may need to feed an infant, may need to just settle an infant. It's very interesting. And so it caught my attention, and then it became even a greater urgency later on, as I had my third child.
Emily Mondschein:
So, I'm sorry, your son who has Down syndrome, what is his name?
Cevan:
His name is Galen, and he is turning five at the end of October.
Emily Mondschein:
Awww. Okay. And he's the youngest?
Cevan:
<laughing> Yes.
Emily Mondschein:
Gotcha.
Cevan:
Yeah.
Emily Mondschein:
How is it going?
Cevan:
It's going much better now. <laughing> Thanks for asking. I think that…
Emily Mondschein:
Now that you're not dealing with…
Cevan:
You know…it’s… it’s… <laugh> I don't want to get too sidetracked here, but I really want to thank you also for your work with medical providers, and how they interact with pregnant people, and how they address this information.
Emily Mondschein:
I mean, it's such a sensitive topic, and it should be handled so much more differently than it is being handled.
Cevan:
So we're doing much better though, <laugh> to answer your actual question.
So I think that we have a hard time with what is possible, and…
Emily Mondschein:
Hmm.
Cevan:
What supports would help on that path, if that makes sense. You know…
Emily Mondschein:
Mm-hmm.
Cevan:
…If you understand that someone has hearing loss, then you know what sorts of things that you might put in place, but if you're just completely unaware of that, you're never going to get those things.
Emily Mondschein:
That's interesting that you're bringing that up. Yeah.
I've just delved into the concept that my son has issues with… significant issues with vision and hearing, and I need to figure out a way to better support that. And I'm realizing, I think it's something everybody, including myself, has been overlooking. You know?
Sure, his glasses are really thick, and his depth perception seems off, and he might have moderate hearing loss on his right ear, but we're just moving along with the accommodations that we've done, and they've worked hard, but I'm starting to think, I think we need other specialists to weigh in on this, because I don't think he's hearing, on top of having Autism and being more internal, I don't think he's hearing very well or seeing well. So, wouldn't you check out, wouldn’t you disappear inside yourself, if it was all…
I don't know. Probably seems like a no-brainer, and at age eight I should… <sigh> you know, but…
Cevan:
It's not, and it probably was not mentioned to… I mean, the only reason I know this as we're turning five is because he had an Early Intervention special education teacher who was doing a lot of face- even masked- <laugh> like face-to-face, close interaction.
Emily Mondschein:
Yeah!
Cevan:
And she was signing, she was signing along with things…
Emily Mondschein:
Mm-hmm.
Cevan:
And it worked really well for him, and I realized, oh, he needs to see it and hear it.
Emily Mondschein:
Oh, yeah. Yep.
Cevan:
And then I got into this whole path where I asked for more sign for him, and they turned me down, and then I kept getting turned down, and I was like, no, no. They're like, well, you need a hearing diagnosis. And I'm like, okay, I'm going to go get a hearing diagnosis. But then it was inconclusive…
Emily Mondshein:
Of course.
Cevan:
…Because he couldn't cognitively do the hearing test!
Emily Mondschein:
Of course. We've gone through the same thing exactly. Yeah.
Cevan:
I got on this path… we finally got the hearing diagnosis, but we had to go to Boston.
Emily Mondschein:
Yes, you said that. I saw that, which is excellent. I thought about doing the same, I mean..
But there's also a Deaf-Blind collaboration in Western New York. Have you heard of that?
Cevan:
No!
Emily Mondschein:
This is what got me all fired up, because they are recognizing that people who have issues with hearing and vision, that's a dual diagnosis in itself.
Cevan:
Ahh.
Emily Mondschein:
And so they're taking that combination and examining ways to best support these individuals based on the two combined. And so, they're telling me about this hearing person, versus this hearing person, this one can bring combinations into the classroom, whereas this one can bring this into the classroom.
And then a mobility one on top of that, to navigate how the large and fine motor skills are being impacted by the hearing and the vision combination.
And I was like, <gesturing and sound of mind-blown> oh my gosh!
Cevan:
Yeah. Wow.
Emily Mondschein:
Yeah, the Deafblind Collaboration. I'll give you the information…
Cevan:
I would love that. Thank you.
Emily Mondschein:
…Any more stuff to the picture… <laughing> But, I think we should pretty much just go ahead and say 80 to 90% of people with Down syndrome have that issue, and it should be part of the whole picture from the very beginning.
Cevan:
Yeah. Yeah.
Emily Mondschein:
But you know, anyways, I digress. That could come up in the questions from what I remember, right.
Cevan:
Right. <laughing> This has been a great conversation already. Shall I launch into the questions?
Emily Mondschein:
Absolutely.
Cevan:
I wrote these so that people with no knowledge would be able to start to feel concern for the topic, and people with knowledge would be able to feel like they were getting some information out of it as well. So hopefully it does a pretty good job of stepping in those two completely dissimilar… <laugh>
Emily Mondschein:
Right. I thought they were good questions. Very insightful and very… very smart.
Cevan:
Thank you.
So, welcome! We're so grateful for your time this morning and your expertise on this area of disability inclusion and specific information on ways that we collectively can make changes that positively impact the accessibility of public space.
Can you start by sharing some information about your professional background, where you work now, and the kind of work that you do there?
Emily Mondschein:
Sure. So, my professional background, I was a teacher for 10 years, and I taught third grade in a local school district. I took some time off to have my children, and my second son- so I have two, my oldest is Samuel, he's 10- and then my second son, Pauly is eight, and he's the one who was diagnosed with Down syndrome, and then later, Autism.
So I decided to stay home, and I was lucky enough to be able to do so, and just really work with the therapists, kind of learn more about what this diagnosis is. And during that time, I started to reflect on what my past had looked like during my pregnancy, and decided I really kind of wanted to hit the medical scene and try to impact some change on how that pre and postnatal diagnosis is delivered, as well as the conversation around Down syndrome.
Cevan:
Mm-hmm.
Emily Mondschein:
And also as a former educator, I wanted to sort of start hitting the ground with local school districts, talking about what inclusion should look like as opposed to what I remembered it looking like when I was actually the inclusion teacher. So that was the caveat for my work. And I started a not-for-profit at that time, geared towards those pieces.
And then I came across my desk, this whole concept of a Gigi's playhouse. And I really loved the idea of a brick and mortar, having a facility, having a place where we could house all these different advocacy-focused passions that I had, and that exist within the community and so many other parents I had met with.
So, started with a small team to start opening a playhouse, and eventually it grew, it picked up its pace. I started as the Site Director, the only person staffed there, and now we have an Operations Coordinator, Program Coordinator, and then I'm the Executive Director at the Playhouse, and it's a really thriving hub for the Down syndrome disability community and neurotypical community.
So, that's kind of the background on where I am now in my career.
Cevan:
That's amazing. Thank you for doing all of that work.
Emily Mondschein:
Yes. It's a blessing.
Cevan:
Yes!
You have a personal connection to this work. What really motivated you to shift from your career as an educator to one in non-profit and advocacy work?
Emily Mondschein:
So my prenatal diagnosis, it was at 12 weeks, I found out that my son had Down syndrome, and it was just so dark, so depressing, so sad, and it just… shined a light on so many issues that I saw within myself, within the community, and it shook me up.
So I was told, when I finally went to see my doctor, she told me some really horrible stories about Down syndrome. When she asked what I wanted to know, I asked her, do you have resources, education, anything for me? I was ready to get that folder, you know, that would sort of guide me to my next steps.
Cevan:
Mm-hmm.
Emily Mondschein:
And she said, well, there were two children that I delivered during my time as an OB/GYN, and they both died by the age of two. She said, their parents had really horrible quality of life.
Cevan:
Oh!
Emily Mondschein:
They weren't sleeping, they were depressed.
And then she kind of went on to explain to me that her daughter had one [individual with Down syndrome] in her swim class who got her period and smeared her pad all over the locker room walls. And she told me it would probably be best if they weren't in our schools, this whole inclusion thing is ridiculous because they need more support in a separate setting.
Cevan:
Oh…
Emily Mondschein:
She went on to tell me about the aggressiveness of men as they get older with Down syndrome.
And all I wanted to know was, what can I expect during my pregnancy? How do you nurse a newborn baby with Down syndrome?
So it was my first time I was really on the receiving end of, I think, discrimination and ignorance to such a degree, for my baby growing inside of me. But it shaped my pregnancy, right? I was so depressed after that, picked myself up, said to myself…
Cevan:
<horrified>
Emily Mondschein:
I know, it's a horrible story.
Cevan:
I’m just…. <upset laughing> speechless.
Emily Mondschein:
I know. It is. It's so horrible.
I'm grateful for it because I don't think… if it had just been not so good, I don't think I would've gotten shot up inside and felt like this has to change, you know?
And then of course, when I learned that it was a widespread problem, it wasn't just my doctor, it's just this widespread issue across our nation, of caregivers and women reporting not similar, but other instances of not the best medical care.
I thought, wow, my baby that I'm carrying, there's a stigma around him. There's discriminatory thoughts about him. Maybe people don't think he should live because of his diagnosis.
And I thought of all the people I'd seen with Down syndrome who seemed so lovely, and I just was shocked. I was shocked.
So I thought, you know what? If my kid is born, and my husband and I don't have a horrible quality of life, and all of this, I'm going to do something about this. <laugh>
So, that in itself was enough to kind of… I'll never forget it.
Cevan:
That's the worst story I've ever heard! That's traumatic on so many levels, including…
Emily Mondschein:
Yeah. I know. I hate to share it because I don't even want anyone to hear that, you know?
Cevan:
Yeah.
Yeah.
I'm really sorry you went through that.
Emily Mondschein:
Yeah. Thank you. Thank you. Right. It's hard enough of a time.
Cevan:
Yeah, it's hard enough of a time, and it's difficult to be presented with that kind of responsibility, and the responsibility of understanding how best to support your pregnancy and your small person when they arrive, but uh, wow- to actually have someone suggest that you might be responsible for public safety issues, or…
Emily Mondschein:
Correct!
Cevan:
…Unhygienic behavior. I mean, it's just… yeah. That's a lot.
Emily Mondschein:
Completely true.
You put that very well, into terms that I had never thought of it, in that sense as well, but like, yeah. Yeah. Thinking down the road to they’re 20, and wreaking havoc on society? The way it sounded, it was just… dark. It was disturbing, I guess.
Cevan:
Yeah.
Emily Mondschein:
And also had it been a one-off, of one just horrible experience…
Cevan:
Yeah.
Emily Mondschein:
…I don't think I would've cared. But when I started to really look into it, I was like, oh no. This could have horrible repercussions, you know?
I wanted to have our child no matter what. But I think it scared… that information scared my husband, and he was like, is this child even viable with life, if this is the picture we're being given?
And it hit me how many people must have a conversation with a medical provider and then make a decision based on misinformation? It's detrimental, correct?
Cevan:
Mm-hmm.
Emily Mondschein:
You have your choice, and your choice is your choice, but if you're being lied to, and given outright misinformation, what is that?
That's very bad, and it's dire.
Cevan:
Mm-hmm. Yes, it is.
I'd like to establish the language around disability that we will be using during this conversation.
I am a “neuro-typical”, hearing-typical parent of a child with Down syndrome, and I usually use a form of person-first language. I feel most comfortable referring to my child as a child with Down syndrome. So that's how I wrote my questions.
Can you share your preferred framework for speaking about Down syndrome, whether it's person first, disability first? And I'd also like to actually mention that the person-first language may be in contradiction to the disability first language that one might use in the Autism community.
So, I'm really interested to hear your perspective about talking about this respectfully.
Emily Mondschein:
You know, I always thought it should be person first, right? First the person, then the diagnosis. And that is how I refer to my son, as a child with Down syndrome, my son with Down syndrome, and I refer to myself as neuro-typical as well.
But when I first started hearing self-advocates saying that they prefer to be called Autistic, I thought there was some power in that. It was almost like, so what if my diagnosis is first? I'm proud of it, it's who I am.
So, I'm a little torn, in that I really appreciate that take, and I also appreciate that it comes from the self-advocates, the people who actually have the diagnosis saying, this is how I feel.
That being said, I will also say I've thought about it from the Down syndrome perspective, and there's no cool way for it to sound, you know, like “Autistic.” Not that it sounds cool, but it rolls off. I guess, “I am Down syndrome,” but I don't like it. I don't know. It doesn't work for me.
So, until I guess the self-advocates come out and start saying that's what they want to be referred to as, and this is how they feel. I think as a whole, our community seems to still really go by the person first language model, and that's what feels right for me when referring to my son. But again, saying that I also really think the Autistic thing is interesting. I like it.
Cevan:
Yeah. No, I agree. And I really appreciate that you brought up self-advocacy, and following the language that people prefer to use for themselves.
Emily Mondschein:
Mm-hmm.<affirmative>
Cevan:
I think it's really important to ask people when we're in conversation…
Emily Mondschein:
Yes.
Cevan:
…What their personal preference is, and then do our best to respect that.
Emily Mondschein:
Yeah, that's the bottom line.
And I always tell people that, because I think people who aren't a part of this world really trip over this language, understandably, because every different, like, section of disability has a different way to be referred to as.
So, as long as you ask, I just think that's what's best.
Cevan:
Mm-hmm.
What words should we not use?
Emily Mondschein:
Geez, I don't like special needs. It feels like… condescending, a little, and it also feels like a word that people are uncomfortable talking about what it really is, so they're calling it special needs. So I don't like that, really.
I don't like different… I like disabilities. I feel like it is what it is. It states what it is. It's real.
I don't like the sidestepping around it. It feels like people who are uncomfortable talking about it, coming up with different terms, I guess, if that makes sense.
Cevan:
Mm-hmm. <affirmative> Yes, it does.
Emily Mondschein:
And then of course, I don't know that I need to say this, but you know, the ‘R’ word we never use around people who have an intellectual disability. That… I'm surprised that I do hear that word still. I hear it in jest, in joking. I've even heard medical providers and educators use it, sometimes when we say ‘MR’, we use the acronym or the abbreviation for it we think that that's okay, but it's not a good word to use.
It's disrespectful. It's hurtful. It has a lot of history behind it.
Cevan:
Yes. Very ugly history.
Emily Mondschein:
Yes, yes. So, I think those… I can't stand “Downs kids” when people will say, instead of a child with Down syndrome, even a “Down syndrome kid” is better than a “Downs kid”. Something about the familiarity of it, or.. I don't like it just sits funny with me.
That being said, though, I give people grace to say things, and I mostly look at the intention behind it. What is the attitude? Are they being loving? Where is it coming from? And I think that's the greater picture with what is the word being used, I guess.
Cevan:
Mm-hmm. That's great.
Emily Mondschein:
Yeah.
Cevan:
One of the themes for our conversation today is inclusion in public space for individuals with Down syndrome.
And it may seem counterintuitive that we are also discussing the importance of dedicated resources and spaces like Gigi's Playhouse, that specifically serve the Down syndrome community, such as the one that you established in Buffalo, New York.
Can you explain what Gigi's Playhouse is, and why a dedicated space like this is necessary, even if the goal is inclusion in the wider community?
Emily Mondschein:
Yeah. This question had been brought to me at the beginning of all of this. Somebody had said, I'm surprised, you're such an advocate for inclusion, why would you create a place that was for only people with Down syndrome?
To which my response is, well, first of all, it's not a place for only people with Down syndrome.
We have people with Autism, we have people with chromosomal conditions coming to the Playhouse.
We have siblings who are meeting other siblings, and they can network and learn from each other, and learn that, you know, it's a different walk when you're a sibling of a child who has a disability. So we have that piece.
We have so many college partnerships where college students are coming in and learning about disability. We have multiple, multiple events where the whole community is coming in and learning about Down syndrome and celebrating the diagnosis.
And beyond that, I always say to myself, you know, we don’t get mad when… or we don't shine a light on as a negative thing when the local Down syndrome association has a get together, or they have a dance, or a Halloween party. So, what would be negative about there being a building for that party? Right? So, that's kind of my take on it.
And then the other piece is that our intention with the work we do through our programs at Gigi's Playhouse is always to be a bridge, a connection, a voice, to get our participants into the community, whether it's into the classroom, whether it's in a job, whatever. We are creating skills, building strength, building confidence to have the end goal be the community.
Cevan:
Mm-hmm. I should have prefaced that by saying, I'm very much with you and I support the importance of it. I think that it's wonderful how much awareness in the wider community that you're bringing, the opportunities for interaction that you're bringing, the knowledge about Down syndrome and providing accurate disability supports…
Emily Mondschein:
Right. Right.
Cevan:
…Which are necessary, and also the importance of representation. This is now a place of visibility and awareness in our neighborhood, (not mine, I consider you my local playhouse <laughing>), but for anyone who is close enough to be interacting in the neighborhood around this space, you have now just created that bridge that you're talking about, which is so important.
Emily Mondschein:
Yes. Thank you. Thank you.
And that was one of the questions that I knew you were going to bring up, that I thought was a smart question, because it was just in the very beginning, when I started this whole process, I thought, oh, why am I doing, you know? And then I started thinking about it like, oh, that's why this is, it makes total sense.
And now living it, it's just such an actually inclusive thing, which is ironic because it is a place for people with Down syndrome, but fostered so many opportunities.
Cevan:
And just to refer back to something that you said earlier in our conversation, there are many people, even medical providers, OBGYNs, who have no idea <laughing> what is an accurate understanding of this, of Down syndrome, and what accurate, precise disability supports might be, such as a hearing aid, <exasperated laughing> or, you know…
Emily Mondschein:
Right!
Cevan:
Visual language supports, uh...
Emily Mondschein:
Yes.
Cevan:
Yes!
So… <exasperated laugh> this is actually something… a service that you are providing, which is amazing.
Emily Mondschein:
Thank you. Thank you.
[Audio clip of voices of kindergarteners on playground fades in]
Cevan:
Thanks for joining us. Be sure to check out our website, kinderpublic.com, for links and more information about our guests and the topic.
A full transcript of the conversation can be found on Kinderpublic’s podcast page. Captioned episodes of all of our interviews are also available on our Youtube channel, where we are @kinderpublic.
We are also on instagram, facebook, and twitter! We’d love to hear from you there.
Please share the episode, subscribe to the podcast, and leave us a rating and a review. This helps us make our message more visible and we really appreciate your support.
I’m Cevan Castle, and my guest has been Emily Mondschein, Executive Director of Gigi’s Playhouse, in Buffalo, New York, and a member of the National Down Syndrome Society’s inclusive education Guidelines Working Group. Our conversation will continue in the next episode.
Please take extra care, we’ll meet you back here next week!
[Audio clip of playground fades out]