News

Trying Vegan Donuts in Berlin

Video description

I’m sitting at a picnic table with three colorful round pastries in front of me. Behind me is my German Shepherd Seeing Eye dog, and a cobblestone square lined with trees.

Haben: This is going to be my first vegan donut experience. These are from Brammibal’s, and they’re actually the first fully vegan donut shop in Europe. The one on my left has lots of crumbles on top. And it’s heavy with some kind of filling inside. It’s overwhelmingly sweet, which is what you want in a donut. And the crumbles are little bits of pistachio, and it’s a good balance of nutty pistachio and also creamy sweetness. I wouldn’t have known it was a vegan donut. It just kind of tastes like a nutty pistachio donut. And then there’s another one!

She picks up the middle donut.

Haben: So I want to be able to share with these videos and travels that disabled people can have fun, can enjoy life. And it’s really about making our world more accessible so disabled people have access to all the different opportunities available to nondisabled people. Even if it’s access to doughnuts! So, what is this one?

She takes a bite.

Haben: Strawberry! Sometimes donuts have very mild flavors, and this one has a very strong strawberry flavor. So I like that. The third and final donut!

She tries it.

Haben: It has more of a white chocolate flavor with bits of strawberry on top. My favorite is going to be the strawberry donut.

She sets the white chocolate donut back on the table.

Haben: The second is pistachio. Even though they’re vegan, they’re still donuts!

Take a Tactile Tour of the Healthy Materials Lab

Blind and sighted people can learn about cutting edge textiles at the Healthy Materials Lab. Taking a tactile tour introduced me to textures I’d read about but never felt, and others that completely surprised me. Located on the Parsons School of Design campus, part of The New School in New York City, the lab gives design students the opportunity to touch, smell, and experiment with innovative, healthier materials. Enjoy this descriptive video tour with Assistant Professor of Fashion Design and Social Justice Sugandha Gupta and graduate research assistant Ahmad Abbasi.

Descriptive Transcript

Sugandha: So I would like to start with this kombucha leather. I’m holding it in my hands. It is a brownish color and it’s very translucent. So it’s like a blend of maybe a rust and a brown color. It’s translucent and it’s made out of kombucha tea with the fermentation process. It has a very strong, pungent smell, and you can almost smell the tea. And it’s very tempting. You almost want to eat it.

My name is Sugandha Gupta, and I’m the Assistant Professor of Fashion Design and Social Justice at Parsons School of Design. I’m a white-appearing Indian woman with platinum blond hair and fair skin and violet eyes. And I’m wearing a black dress and a golden necklace. And today we are talking about three different sustainable, renewable leathers that are made out of natural materials like plants and kombucha tea.

Ahmad: Hello, I am Ahmad Abbasi. I am a researcher at Parsons Healthy Material Lab, and this is where we are right now. I am a white-appearing male with a bald head and a gray shirt. Yeah, we will be talking about three kinds of leather that we have at our Healthy Material Lab. And we will talk about why they are healthy and what they could be used for.

Sugandha: It is edible because it’s made out of an edible material, which is kombucha tea. It is very soft and malleable. And an interesting thing about this material is that it can melt with heat, because it is made with fermentation and it doesn’t have any coating on it, it’s natural. Do you want to talk about the circularity of this material?

Ahmad: Yeah. As you mentioned that it, it melts with temperature so that doesn’t make it durable, but that means it’s compostable or it’s biodegradable. So that, that adds to the sustainability or circularity of the product. And because it’s made of bio materials. So, yeah, that’s how we consider it healthy.

Sugandha: And it doesn’t require any kind of emissions of gases, so it doesn’t have any big carbon footprint. You would usually just make a big vat of the tea with fructose and then let it mold and then dry that to make this leather. In fact, in some of the areas of this leather you can even feel the bumps or the bubbles trapped inside it. So it’s a really fascinating material to work with. And what’s really interesting about it is that researchers have also used interesting medicines to inject in these kinds of leathers to also emulate the medicinal aspects of materials that we can wear on, on our bodies. So next we would like to talk about rhubarb leather. It is made out of rhubarb, which is…you want to elaborate on that?

Ahmad: It’s made out of protein. So protein fibers and yeah, it’s like, you can say like synthetic leather, but it’s made of healthy materials. We…we include labels in our libraries so researchers and students can come and read descriptions about the materials and what it’s used for.

Sugandha: And also this material looks just like…and just like a leather hide. So it has a tan color and it has a soft surface at the back, kind of like suede, but it’s maybe a little more rough than suede to touch and very smooth on the surface. And unlike natural animal leather, it is not as flowy or drapey. It does not have any stretch. So this is the second leather. And just so you know, rhubarb is a material that’s also used for making natural dyes. So it’s fascinating that you can also get this kind of leather out of it that can be applied in different materials, like bags or even belts, etc. And last but not the least, we would like to talk about mushroom leather.

Ahmad: Yeah, yeah. Mushroom or mycelium leather. It’s…it feels like foam a little bit. It’s usually not used in fashion, but used in construction tiling and insulation. It has a brown color. And yeah, as I said, has a foamy texture. Interesting thing about mycelium: it could be used in a wide range of products, not just leather, but in different applications as packaging or as furniture. And they take different shapes and forms.

Sugandha: And it also is interesting because it has a lot of marks, natural marks and bumps and dents on it. It’s very…cozy. Feeling like it has, it’s soft but you can also like kind of pinch it a little bit or press it a little bit, and it almost leaves kind of an indent. And it also just resembles a little bit of wood grain texture on the surface because it’s not even colored. There’s unevenness of the hues throughout it. It’s quite strong. It’s not stretchable, it’s very stiff material, but it’s very, very soft. And it has a lot of structure in it. So that’s really interesting about it. It’s very structured. So that’s our little insight about these natural leathers. And you can come to Healthy Materials Lab to check these materials out to see what they feel like, and experience them and touch them.

Ahmad: I’d like to add that mycelium is rapidly growing and easy to grow. So that also adds to the sustainability. So you can grow the mycelium, create the product, and at the end of life, just recycle the mycelium. Maybe use it for growing new mushrooms or mycelium for other products. And yeah, we can visit the Healthy Material Library. It has a wide range of materials and products, and textiles and construction and plastic–bioplastics. Which can help designers get an idea of what are available options to use in their designs.

Designing with Disability Pride: Professor Sugandha Gupta & Haben Girma at Parsons School of Fashion

If you’ve ever felt isolated and wondered how to build community, if you’re frustrated with ableism and dream of designing in ways that no longer marginalize people, then you’ll appreciate this video from the Parsons School of Fashion. Parsons’ Disabled Fashion Student Program hosted this powerful conversation on October 16, 2024 at The New School in New York City, you can watch/listen to the video recording here or read the transcript below.

Sugandha Gupta is the Assistant Professor of Fashion Design and Social Justice at Parsons School of Design. Born with Albinism and visually impaired Gupta creates Sensory-Textiles which are a collection of textiles and wearables that encourage audiences to engage through their sense of touch, sound, smell, and sight. Gupta’s research interests lie at intersections of disability, environmental, and social justice. With over 18 years of experience in the textile industry and an established textile art practice, Gupta’s work is exhibited at The Guggenheim Museum, The Met Museum, UN Headquarters, Hunterdon Art Museum, The American Craft Council, and the Smithsonian Craft Show among other museums and shows. She has won prestigious awards such as The Dorothy Waxman Textile Prize, International Design Award, and CFDA Design Graduate.

Descriptive Transcript

Sugandha: I would like to start with a little brief self-description. I’m a white-appearing Indian woman due to albinism, and I have platinum blond hair, pale skin, and I’m wearing a black dress with a golden and black necklace. I’m so honored and excited to welcome Haben Girma. Can we please start by giving her a round of applause?

(Applause)

So I would like to start by just sharing a few access notes for this event. We have ASL interpreters. We have CART, which gives us access to live captions up on the screen on the projector which is right above us. This is a rectangular room which has a slope while you come into the front of the room, and there are rows of red seats covered with leather on both sides of the room. And I and Haben are sitting in front of the room towards the right corner, where we have a little table, and we are sitting and speaking from there. I have past some fidget objects or some tactile objects for relief for anybody who needs them. So I’m so honored and grateful and beyond excited to welcome Haben Girma, the first deafblind woman who conquered Harvard Law. She is named the White House Champion of Change by President Barack Obama. She secured a spot in Forbes 30 under 30, and she’s also a Helen Keller– She also received the Helen Keller Achievement Award, amongst many of her other accomplishments. She’s an amazing and prolific and powerful champion of change and a disability advocate. So thank you so much, Haben, for coming and sharing your wisdom and knowledge with our community. So in this event, I will be starting with a question and answer round. It’s kind of more of a moderated conversation and it will last about 35 minutes, followed by a 15 minutes Q&A with audience members. So it will be open up– opened up to you. Our volunteers will be having mics, so please feel free to just raise your hand and, or just call out our volunteers and they will be happy to come and bring the mic to you to answer or to ask your questions. We will also honor our audience members who are joining us online. And Katherine Leary, who’s my colleague, has offered to help with that portion of the Q&A. So with that, I would just like to get started. Haben, would you like to self describe yourself before I start?

Haben: All right. My mic is on. Good evening, everyone. In the blind community, there have been lots of conversations about self-descriptions. Do we need them? Do we want them? And it’s actually really healthy to have the debates and disagreements within disability communities, just like nondisabled people. There’s lots of different opinions and that’s healthy and okay. We are at the school of fashion. And if there’s any place to describe outfits and clothing -it’s here at the school of fashion. (Laughter) So I often don’t describe my outfits, but this is the right context. And I’m wearing a red dress with short sleeves, a black scarf, shawl with red accents. And I also have earrings with a bit of blue on them. Beside me is a German Shepherd Seeing Eye dog. I’ve asked him not to speak during the presentation, -but sometimes he has different opinions.  (Laughter) I also have in front of me a Braille display. Those of you who know blind tech, it’s a BrailleNote Touch. I’m Deafblind. And I’m not hearing or seeing the audience, but I am reading what is being said through Braille. And I have a typist in the front row who’s transcribing what’s being said, and you might notice a delay between when Sugandha asks me a question and when I respond. And that’s because the Braille is coming through. Part of accessibility is patience, allowing people time to communicate in whatever way they need to communicate. Some people voice, some people sign, some people use disability tech. And we still have a culture that stigmatizes voices that are considered other or different. Voices with accents or in many spaces, feminine sounding voices are stigmatized. So we need to work on creating a culture where all voices are valued, regardless of whether there’s an accent. Whether it’s voicing, signing or typing. Back to you, Sugandha.

Sugandha: Thank you, Haben. And that was an excellent self-introduction. And actually my first question follows through with that. So thank you for setting it up for me so beautifully. So as disabled individuals, and just for reference, I will be using the word disabled individuals or disabled people or people with disabilities interchangeably. And the reason for that is that I want to claim the power in my disability identity. But I just wanted to put that out there. So as disabled individuals, we navigate the world in many creative ways. Can you please share your journey of exploring different ways of communication and connection?

Haben: Absolutely. And like you, I also prefer identity-first language. There are many people who ask me, “Why do you say you’re disabled? You’re not disabled. You’ve done so much. You have so many talents.” And when they say that, they’re inadvertently saying disabled people can’t be talented or disabled people can’t go to school. So when I am claiming the identity of a disabled person, I’m teaching people that of course, disabled people can have talent and give back to the world. I also have found that that word helps me claim community. I recently traveled to Australia, and I didn’t know many disability advocates in Australia, so I was able to go into social media and Google and type the word Disabled Australia, Disability Advocates Australia. And that word helped me find other disabled people to meet and learn from. So when we claim the word, it allows us to connect to other people and build community. So I’m grateful for claiming that identity. Sometimes people advocate for alternatives like special needs, differently abled, handi-capable. That is linguistic gymnastics. And when you have to engage in linguistic gymnastics, that’s more mental work. And that mental work is reminding everyone, this is shameful. Let’s tiptoe around it, because this is still uncomfortable and shameful. That is why many advocates say claim the word disabled. So that’s one of the ways I navigate the world and connect with people by being intentional with the language I use. I’m also very intentional about communicating differently, needing more time to be able to read a question so I can respond. There’s still many people who say, no, that’s different. That’s weird. And then when I do radio interviews or podcasts, there’s the question of what do we do with the silences between the question and the answer? Because a lot of spaces can’t handle silence, and they need to fill every moment with noise. Some people say that silence is an opportunity to reflect on what was said, to process what was happening. A lot of people are also multitasking, so they may be listening to a podcast and doing dishes or laundry, so it gives them additional processing time as they’re listening to information. It’s a constant conversation, navigating a world where you’re not really imagined as being part of the world, and you have to find communities that want to include you. And the word disabled helps me find a lot of those communities. Back to you.

Sugandha: Yes, I completely agree. Disability is not a dirty word. Disability is a wonderful opportunity for all of us to really discover all the different ways that our bodies can adapt and create really in this world. Speaking with all the creators in here. So disability in quotes, “Disability never holds anyone back. Disability is not something that needs to be overcome. Barriers that exist are created by society, and it’s up to every single one of us to work together to remove these barriers.” Hearing you say these words deeply impacted me as a newly formed immigrant in America and a graduate student with a disability. Can you please share with us your journey of disability advocacy?

Haben: Absolutely. So I have evolved just like everyone else grows and evolves over time, and I said disability never holds anyone back. And then I listened to the community and I realized that’s a very privileged thing to say. Because my own disability is not a barrier to me and doesn’t hold people back. But there are different kinds of disabilities. The experience of living with chronic pain is different from the experience of being Deaf, which is different from other kinds of disabilities. So it’s really important. Many of us start out as self-advocates and we’re very focused on our own specific disability experiences. Then through conversations with other disabled people, we realize similarities and differences, and we start growing and moving forward on our disability journey. So I would love to rephrase that and say, for many people, disability is not the primary barrier. Ableism is a very significant barrier that touches almost every disabled person. And ableism is a set of beliefs and practices that treat disabled people as inferior to nondisabled people. For example, designing schools, only imagining sighted hearing people going to that school. Or designing clothing only imagining people who walk and stand wearing that clothing. So we need to start planning with our designs, our schools, our programs, imagining disabled people being part of that journey. And one way to do that is increasing hiring of disabled people. When schools, when students can go to school and see disabled faculty members and disabled instructors, they get more opportunities to find potential mentors and imagine different futures for themselves. So I would love to see more schools and other organizations increasing hiring of disabled people.

Sugandha: Yeah, I think I want to elaborate more on ableism and really go deeper into that conversation. So ableism often gets magnified when we are living and navigating personal and professional lives with a disability, and also multiple marginalized identities. How do you explain to people who’ve never heard of ableism that they may be perpetuating ableism? And in that process, deep harm?

Haben: You’re right.  It’s kind of tricky to understand it. And one way to help to understand it is through stories. And some stories that have been circulating recently regarding ableism is how many drivers, once they realize a potential passenger has a disable—disability, they cancel the ride. This happens a lot with rideshare like Uber and Lyft. This happens a lot with the taxis. So I remember one time I was in New York City. It was late. It was cold. It was raining. And a friend and I had just had dinner. So we were outside the restaurant waiting for the Uber to arrive. It came over and my friend saw it, and we walked over. And they said, “Oh no, we’re not having a dog in here.” And they left. Second car came, they came over and they were like, “No dogs.” And we said, “This is a guide dog. You’re required under Uber policies and under the Americans with Disabilities Act to accept passengers with guide dogs.” And they still refused. We called Uber again. Third one same thing. We also again tried educating them that this is against Uber’s policies, and against civil rights in New York, and federal civil rights. And they still refused. Sometimes people ask, “Why don’t you do a taxi or Lyft?” That actually is also a problem where drivers assume that they can reject disabled people. And it’s not just guide dogs. Disabled people with other assistance dogs face this. I’ve heard from Deaf people who say they want to communicate through texting with the driver and the driver refuses. So if you let the driver know that you’re Deaf, sometimes they’ll cancel. If you have a wheelchair and the driver comes by and sees you have a wheelchair, they’ll cancel and drive off. That happens to a lot of disabled people. What puts all these stories together? It’s ableism. So ableism is systemic. It’s the belief that it’s okay to turn down disabled customers. It’s okay to run a company that treats disabled people poorly. That’s an example of ableism within the transportation industry. There are examples of ableism in schools, examples of ableism in employment. So it is a systemic practice of treating disabled people as inferior. It’s the practice of providing chairs and microphones and lights as accommodations for nondisabled people. But if disabled people ask for an accessible restroom or they ask for sign language interpreters, then organizations say, “Actually, no, we’re not going to do that.” That’s an example of ableism. Does that help?

Sugandha: Yes. That was excellent. I love the example of lights and chairs because we take that for granted. Like that’s just common knowledge. Like, yeah, we have to have lights. Yeah, but a lot of blind people don’t need lights. You know, it’s just us sighted people who really need lights. So I love that example that you shared. I think it really sheds light on how ableism is just the difference between, the accommodations that nondisabled people need versus the accommodations that disabled people need. Did I put that correctly?

Haben: Yes. Yes. So normalizing accommodations for nondisabled people, but acting like accommodations for disabled people is extra optional. That’s ableism.

Sugandha: That’s right. So just going further on that. You know, we have a lot of educators here in this room. And we have students here in this room. We also have content creators just going off on understanding ableism. How do we as creative people, as designers, as design educators, combat ableism or even start to really find ways to address it in a meaningful way?

Haben: The main way to start is by listening to disabled people. And you could read books by disabled people in your field. So if you are a scientist, read books by disabled scientists. If you are a designer, read books by disabled designers. And many disabled leaders are sharing their experiences on social media. I follow many disabled people on social media, and I’m constantly learning. And again, it’s also about learning from different disability experiences. Disabilities different from your own. Because we need to advocate for the entire disability community. And we do that through listening. Increasing hiring is another great way to do it. Organizations should have an accessibility officer, someone who takes responsibility for ensuring that everyone on the team is constantly learning about accessibility and everything from digital services to facilities are planned for full accessibility. And if things change, if there’s a software update or… An elevator breaks, that there’s a system in place to come– to create an accessible solution. And if the school does not already have an accessibility guide, a guide for accessible classes, a guide for holding accessible events, then it’s important to create such a guide. So there’s an easy toolkit. If a professor wants to know, “How do I make sure this program is accessible?” Or students want to set up an event, and want to make sure it’s accessible. So make sure those guides exist. And if they don’t, create them.

Sugandha: Yeah, I think that those are really helpful points. And I especially loved how you talked about just thinking about very simple ways of understanding people with disabilities so that we can really learn from their perspective. I think just being open to talking and engaging and forming more organic relationships with people with disabilities and not just transactional, you know, relationships or like just having disabled subjects. I think that’s really, really important. Just understanding the wide, wide spectrum of disability. So I know that we are all really adventurous and we all have different ways of experiencing fun and adventure. So as someone who is adventurous, curious and an explorer, what are some ways that you self-advocated to gain access to learning skills to your interests and hobbies?

Haben: You know, that is kind of balanced out by ableism, because if there are too many barriers to a hobby, it stops being fun and then becomes work. We’ve talked about how sometimes you try to go on vacation as a disabled person, and then there are a million access barriers. And the vacation is no longer relaxing because you have to decide, do you advocate or… Do you just put up with it and deal with it and leave your vacation ruined? So some of the hobbies I’ve adopted are in part because I found people that said, “Yes, let’s make this work. Let’s make this happen.” I remember I was interested in improv comedy, and I reached out to a school in the Bay Area that does improv comedy, and they said, “We don’t mean to be discouraging, but you’re Deafblind. We’ve never had a Deafblind student. We have no idea how to make that work. And yeah, we’re sorry.” So I did not take improv comedy classes at that school. And I had other things on my plate. So I decided to drop it. And a year later, NBC was interviewing me and they asked me, “Are there any things you wish you could do that you haven’t done before?” And I told her, “I would love to take an improv comedy class, but the schools don’t seem interested in being accessible.” So she published that in her story. And then very soon, a school in New York emailed me and said, “We’ve also never had a Deafblind student, but we’d love to make this work.” In fact, improv comedy is all about inclusion. It’s about supporting your teammates and finding ways to connect and communicate with your teammates. And we had workshops here in New York. It’s called Face Off Unlimited. They’re in Queens. And we discovered that having a disability creates unique opportunities for comedy. So there was more humor and more opportunities for laughter when you have a very diverse cast, including someone who is Deafblind.

Sugandha: Yeah. How our unique experiences are again opportunities for being creative and really just understanding different experiences, but also just embracing the diversity, the richness that comes from that experience. So I want to come back to us as a group, as artists, as designers. We are people who learn about creativity. We learn skills and tools that help us thrive as creative professionals in our respective industries. And I want to know if you have advice for our budding designers and students to take on, not just disability advocacy or, or combat ableism, but also center disability in their process. So do you have any advice or any kind of tips that you would like to see or any aspirations that you’d like to see from budding designers and artists and creatives?

Haben: Absolutely. So I want to share a few changes I would love to see in our futures. I would love to have more examples of how clothing and outfits look when one is seated. Many people who use wheelchairs or have other mobility disabilities that often have them seated also want to buy clothes, but many models are featured standing. So that’s a change that we can make. Let people know how things appear when one is seated, and also designing to maximize enjoyment and comfort for people who are dressed and enjoying clothing while seated. We also would love to have more visual descriptions of how things appear. When we’re shopping for outfits, we’d want to know what do they look like? What do they feel like? Those descriptions should also have elements of textures, how soft it is or how does it drape? So those details should come through in the descriptions. And if we had more disabled designers included we could also find new ways to create in our world. And I was very excited to learn that Parsons has a disabled scholars program. That is really, really progressive, and it’s something I’m sharing with other schools. Other schools should also have programs supporting disabled students. It’s going to help the field move forward. The more diverse our student body is, the more innovative designs we’ll have. And that’s going to help everyone.

Sugandha: Yeah, yeah, I think that that is definitely something that I’m proud of, of this university really taking the lead in including disabled students and really charging forward and pioneering that. So, this next question is a little bit thorny and controversial. Just to give you a heads up. Oftentimes people view disability and think about disability from a perspective of cure and our medical prognosis. So I want to know what your views on that are and how you think about how sometimes, you know—and this relates to our earlier question about design and art—and, you know, us as creatives wanting to center disability. So I just want to know a little more about how you would direct or urge our students to think about this, and how you as well think about this as well.

Haben: Many things we love in our world started out as medicalized, separate, special things for disabled people. For example, jacuzzis started out as medical devices for people with disabilities, and it was actually a child in the Jacuzzi family that had a disability. And the Jacuzzi family made the Jacuzzi for their child, and they discovered, wait a minute, lots of other people also want these jacuzzis. So they started selling them. They became super popular and now it’s not even associated with disability anymore. It’s just something that’s associated with relaxation and joy. There are a lot of stories like this where something starts out medicalized and then becomes mainstream. So if you find yourself tempted to think, “Oh, that’s for doctors, that’s for medical facilities,” pause and reflect. Is that ableism? Do you have internalized biases that are holding us back from amazing new inventions and discoveries? So, try to avoid the medical model and instead embrace the social model of disability. Disability is sometimes defined as a mismatch between our bodies and minds and a specific environment. And we can adapt to the environment so it’s a better match with our bodies and minds. So keep designing. Keep innovating. Listen to disabled people and keep growing the disability program here at Parsons.

Sugandha: Yeah. Thank you so much, Haben. And my next question is for those thorny experiences when people ask you questions, and also myself included, when people ask me questions about my capabilities and question or doubt my abilities. How do you traverse these conversations? When people are unkind and misunderstand you due to their own ignorance? And of course, ableism?

Haben: When I was younger,  I wanted to prove them wrong. So, because I’m Deaf and I don’t always respond right away when someone’s trying to get my attention, they assume, “Hmm. Does she have an intellectual disability?” And in our society, we’re taught to take offense, that it’s a bad thing to have an intellectual disability. But that’s actually an example of ableism, treating disabled people as inferior to nondisabled people. So when people are showing their biases and showing their assumptions and ignorance, I try to treat them and respond with kindness and patience. Someday they will continue growing on their journey of understanding accessibility, and they soon will understand ableism and all the biases that are hidden in our world. But I don’t need to continue those biases. I don’t need to put down another disability group. So that’s…I do my best to respond with kindness. If I’m having a really bad day, I’m just not going to respond at all. We don’t have to always educate people. We can take a break from that.

Sugandha: Yeah, I really appreciate hearing that because sometimes as an educator, I find it hard to forget that it’s not my responsibility to constantly educate everybody and make them understand. And sometimes it’s okay to just let it be and, you know, let time heal them and help them understand their own barriers. So I just have one last question, and then we can open it up to the audience members. so for anyone who has an experience of being excluded and mis…misjudged–excuse me. What is your advice? How do they find hope and energize themselves and keep persisting?

Haben: Start by seeking one other person who treats you with respect and kindness. There is a lot of discrimination in our world. I get rejected by cab drivers and Uber and Lyft drivers all the time, and it’s exhausting. I travel a lot and sometimes hotels treat us poorly because I have a service dog. Sometimes it’s hotels that say they’re dog-friendly. I had a fascinating experience in India where I was looking for a dog-friendly hotel and a hotel advertised as dog-friendly, but when we arrived at 2 a.m., they’d actually never had a customer with a dog. (Laughter) So they were very surprised. And we told them about their website and they were like, “Yes, but we just started that two weeks ago.” (Laughter)

Sugandha: Oh my God.

Haben: But they…they eventually were very happy to have us. And before we left, all the staff asked me for a photo. And we took a photo with all the staff and my guide dog, and they thanked us for coming and teaching them about cool guide dogs. So it’s a lot of patience and educating, and I keep doing this because I find people who are kind and caring and treat me with respect. And our disability community is growing. That disability community also includes nondisabled allies who take time to learn, understand, adapt so there’s a little less friction in our world. So if you are feeling isolated and don’t have a disability community, seek it out. There are online groups. And the different social media groups. There are listservs through email if you prefer that. You can check in with your local disability organizations. It may take a little time to find that community that resonates with you, but keep searching because it’s absolutely worth it.

Sugandha: Yeah. Thank you so much, Haben, for amazing insights. I would like to open it up to our audiences both online and in-person. Before you ask your question, please describe yourself just in a sentence or two as to how you look like and maybe just give us a little more context. Maybe share your name and follow that with your question.

Nia: Hello, my name is Nia Stanford, and I’m a Black young woman with braids in a ponytail. A black jumpsuit with a camel and black striped turtleneck. I’m one of the disabled fashion student program scholars, and I wanted to ask you, as somebody that has been misjudged or mistreated a lot because of your disability, how can you best overcome that and try to be more of an advocate? And like do things with content creation maybe? Because I see other disabled people on Instagram and stuff, but I don’t know how to do that type of thing. So I was just wondering, how do you approach that as like a disabled person?

Haben: That is an excellent question. Thank you, Nia. So, I do not advocate all the time because to advocate takes a lot of energy. Sometimes we call that spoons, and sometimes you don’t have all the spoons to make an advocacy video for a certain issue. So if you need a break,  do honor that need for a break. Because rest is part of advocacy and we really do need to allow ourselves to rest. When you feel rested and energized, then you advocate. And a lot of my advocacy is possible through teamwork. I want my videos on social media to have captions. I can’t see the captions, I can’t see the video. But I have deaf friends who are sighted and I want them to be able to access the video and enjoy. And so I take the time and my colleague will add the captions, and we’ll make sure that accessibility is there. Another piece for, for my videos on Instagram is descriptions. Again, I can’t see the visuals in the video, and I have blind friends and followers who can’t see the visuals. So descriptions help ensure they have access, and I have access to the visuals in the video. That’s really important to me that when I’m advocating that advocacy is accessible; and it’s role modeling the world I want for all of us. That takes energy. So I can’t do it every day. But, I try to do it when I have the energy to do so. So give yourself time and space, and when you’re ready you could… It also helps to follow different disabled people on social media. And I’m constantly learning from other disabled creators, different strategies for how to format your captions. And sometimes I’ll have conversations with other disabled creators on the best way to describe things, or the best way to add captions to videos. So… You have a disabled program here in Parsons, and over the years it’s going to keep growing. And that’s going to connect you to many different advocates you can talk to and reach. And Sugandha and many other people who are great resources to help you reach even more advocates to ask questions about how to keep advocating and how to get your Instagram posts, reels, whatever you choose, as accessible as possible. Any other questions?

Sugandha: Kat, can you please check if there are questions online for Haben.

Mark: My name is Mark, and… I’m…Pardon? I’m 61 years old and I’m bald on top, and I have a white goatee. And… For the first 30 or 40 years of my life I was fully abled. And gradually I began to lose my hearing. And I guess the battle that you’re talking about is happening within my life. (Overcome with emotion)

Haben: I’m really grateful you’re here. What really helped me was attending events like this where I could hear, or read, from other disabled people, and learn how they deal with different challenges in their lives. It’s hard to…to lose a sense that you’ve had most of your life. And those transitions are harder when we’re alone. So if we find community with other deaf and disabled people, learn about different strategies for maintaining connections, I think that’s really powerful. There are some really great books out there that have helped me from deaf and hard of hearing authors, what their experiences are like, and that feels less alone. So I’m really happy you’re here, Mark, and I hope Parsons continues having events like this to bring our community together.

Sugandha: There’s another question coming up, Haben.

Jeannie: My name is Jeannie. I’m a Black woman wearing a floral scarf, and a black sweater. I had to check. So this is maybe, a self-serving question. I work with a student at a public school who uses cochlears, and I work with a music program. And her sign language interpreter gets very upset when it’s music time and does not feel like it is appropriate for the student to have to sit in the class during music time. She very much likes it. And my question is, what are good ways to advocate for young people, and I’m speaking about elementary school children, who might be in a situation where traditionally they’re engaging in something that may not have been extended to them, but they clearly are enjoying it? So I guess, how do we best advocate for young children with disabilities to engage in the arts? Arts like music for a deaf child or maybe a art like visual or tactile art for a child that is unable to see?

Haben: I love that question! Essentially, follow the child’s lead. If they’re enjoying the class and program, do everything you can to keep them in the program and find out what can we do to make this even more accessible? How do we increase access to music? research Deaf musicians. There are deaf musicians. Find out what strategies they use and…and through that, you can help kids continue participating in programs that bring them joy. Same thing with blind kids and art. We’re often excluded from art under assumptions. “Oh, there’s no way to make that accessible.” But those assumptions are the biggest barriers. There are ways to make art accessible. There’s tactile art. There are paints with textures. So if you find yourself in a situation where you’ve never heard of a disabled person in a specific program or class, consider it an invitation to explore what are the barriers and how do we find solutions to those barriers. And oftentimes you will find there are already disabled people, Deaf people, blind people engaged in those arts.

Sugandha: We have another question in the front. It’s coming up, Haben.

Olivia: Hello, my name is Olivia. I am a mixed white Latina with long brown curly hair, wearing a white sweater and pink orange-y pants. I am also hard of hearing and I wear hearing aids. I communicate with spoken English and ASL. I wanted to comment on the person who described the story that was just shared about the child with cochlear implants in the music program. I felt like I was in the same boat, being hard of hearing and loving music. While I didn’t have to fight for my place or enjoyment of the arts like maybe this student is experiencing, I would have loved to meet or encounter another Deaf or hard-of-hearing person, or even disabled person who enjoys music. So I just wanted to reiterate the importance of having other disabled community members in the room in these programs so that these kids can be exposed. When the only other person in the room communicating with a child happens to be the interpreter, I don’t think oftentimes that interpreter realizes how much influence and bias they carry because they’re the only person in the room who may know sign language or who may communicate using the tools that that child uses. So again, having other disabled, deaf, blind, low vision folks in the room, even just as a special guest for one day can make all the difference. Thank you.

Haben: I absolutely agree. And there are also camps and clubs. If you can’t get to a physical one there are virtual ones that bring Deaf musicians together, or a different kind of art and disability group together. So if you can’t bring another disabled kid into the program at that specific school, facilitate access so that the class where they’re the only Deaf kid is complemented by a summer camp where they’re surrounded by other Deaf kids who are engaging in the arts, or a club or community group where they’re also surrounded by Deaf kids. And the language piece is huge. We should have teachers encouraging the other students to learn sign language so the student can communicate with classmates and build friendships. So the schools should have sign language lessons, if you have students who rely on sign language. Thanks for sharing that.

Sugandha: We have just time for one last question. And there’s a hand raised in the front row.

Sveta: I’m going to use the interpreter.

Interpreter: I’ll be speaking for you.

Volunteer: The interpreter will be speaking for… -one of our guests who has a question. –

Interpreter: She will speak for you. And I’m going to sign for everybody.

Volunteer: Do you need the microphone or…?

Sveta: Hi, everybody. I’m Sveta and…and I’ll give a quick description of myself. I’m a brunette and I’m wearing a striped shirt that’s red and white and pink–striped shirt. So the two of you were talking about the medical devices. And as a Deaf person, as a Deaf person myself, throughout my childhood— I became Deaf when I was two— and I got hearing aids and used them throughout my childhood. And I started with the old-fashioned hearing aids that you wear on your body. And I hated those, so I changed to BTE hearing aids. And I have a cochlear implant now, so I’ve noticed that people, especially older people, tend to not like using hearing aids because they think it makes you look old. But I’ve been using hearing aids since I was a young child. And also talking about fashion. And I’ve noticed that young people love to decorate their hearing aids. They put bling on their hearing aids. They don’t want to hide it anymore. And some of them don’t want… some of them also want to make their hearing aids smaller so that people don’t see them. But I’ve worn hearing aids my whole life and I don’t care. And when people see my hearing aids, that’s how they know that I’m Deaf. Also, you were speaking about jacuzzis. I’ve seen that, with hearing aids that Apple has started to have, AirPods with wires coming down. And that reminds me of my old-fashioned hearing aids that everybody thought were so embarrassing. But now people wear AirPods all the time and they’re fine with that. But people who are Deaf and hard-of-hearing who need them are resistant to them. And then Apple also has AirPods that are also hearing aids in the AirPods, but that actually only helps people with mild hearing loss. It doesn’t help people like me, which is why I get more benefit out of a cochlear implant. So I think it’s just important to spread awareness about hearing aids and to decrease the stigma associated with hearing aids and things like hearing aids and cochlear implants can be part of fashion. Same with glasses. Of course people do all kinds of fashionable things with glasses, but they don’t want to do fashionable things with hearing aids. And I think… Glasses for some reason seem to have a better reputation than hearing aids, which is interesting.

Haben: That is a fabulous point about how our culture can change from finding hearing aids not worthy of decoration and bedazzlement, and now many younger people choosing to have colorful, flashy hearing aids. Similarly, in the blind community, more and more people are having decorative canes. There’s a woman in New York named Lachi who makes glam canes that can be dazzled and decorated in whichever way you choose. And there are people decorating wheelchairs and other devices. It’s kind of part of the disability pride movement. And I also think it helps educate more people not to be ashamed of the tech they use, and not be afraid to let people know that you’re deaf or hard of hearing, or blind, or have another disability. So yes, we want to educate more people about the value of having hearing aids, cochlear implants, or other disability tech that would make your life easier and knowing that you can decorate it if you want to. And we should have our students here make sure that when you are designing products, clothing, hats, you’re also making sure that they support our different bodies and minds. That they support hearing aids like glasses that work well with hearing aids or hats that work with cochlear implants. So design for all different bodies and minds because we also want to celebrate beauty, have delightful designs that are comfortable and functional.

Sugandha: Yeah. and I just wanted to add I just love this conversation because what it’s doing is it’s really sharing with communities that we really want to celebrate disability. We really want to share the unique experience or the rich experience or the embodied experience of disability. And not really have to feel shame, shame of it. we really just want to proclaim our disability and our identity. And also as designers, how can we enhance what we make? How can we make it more versatile so that we don’t segregate or sequester people that have already been marginalized and excluded for so many years? So I really appreciate this conversation and wanted to highlight it. We do have a little bit of time for just another question. If somebody would like to ask another question, we do have a few more minutes. My colleague Kat is checking if there’s a question online. So we’re just waiting for her to say that.

Kat: I can’t move this without interrupting… the screen. So we’re going to ask her to text it. Perfect. We’re having some tech issues. I can’t get to the screen without interrupting this screen that’s functioning. So we’re going to have someone text it and read it out. Hold on one second. Thank you.

Lila: Hi. My name is Lila, and I am an Asian woman with red hair and glasses. I’m wearing a black jacket with black and white cuffs and a white t-shirt. This question is from Lucia and Antonia, and it’s online. And this is what they wrote. “My name is Lucia. I am a white Latina woman currently connecting over Zoom. I want to express my deep gratitude for this session and for the opportunity to hear your experiences. I’m thankful for the chance to engage in this conversation, which challenges and invites us to reflect on how we engage with and belong to one another. It encourages us to honor and respect diverse perspectives, fostering deeper connections and understanding. I’m also listening to this conversation with Antonia, a nine-year-old that wants to say, ‘I like that you are doing this because it’s very helpful for learning from your experiences.’”

Haben: Thank you so much for sharing that. I’m glad you’re listening to this and joining us. And I am grateful everyone took their time on a cold New York night to come here and join us. Do we have any other questions online or in person?

Kat: One last question in the front.

Nia: Hi, it’s Nia again. I just have a question. So I’m visually impaired. I also have lupus and arthritis and a nonverbal learning disability. And my question is… How can I get better at like advocating for myself? But I do that pretty well, I think already. But like, being more comfortable with my disabilities and not feeling like shamed or angry at the world about it, or like because I’m different. I’m like trying to find people that are also different, that would be willing to be my friend, because that’s been hard… Yes.

Haben: Oh, that is such a good question. So I feel like what made me feel more comfortable with my disability and gain more confidence, the confidence to even like, teach people how to advocate when becoming friends–because friends are going to witness some of the barriers I encounter. And some people are going to feel tired and not want to deal with it, and that’s not going to lead to friendship. But some people are going to stand by me and witness what’s happening and join in advocating. So to get that confidence, I found that by spending time with other disabled people, other blind people, other Deaf people, other Deafblind people, folks who use wheelchairs, folks with arthritis, all different kinds of disabilities. And through that community, I witness other people being confident in the ways they’re different. And joking about their disabilities and the access barriers and the solutions to the access barriers. That helped me get ideas on how I could also laugh at my disability, develop strategies for ensuring accessibility and build friendships with others. Disability friendships and disabled nondisabled friendships. So my recommendation: start with this room. When we finish, we could all connect. I would love to invite everyone to introduce yourself to two new people. We have lots of great people here. Invite yourself to meet two new people. And you can ask, “What are you inspired to do? Sugandha and Haben had a great conversation. What action are you taking? What are you inspired to do?” So that will be our homework for the evening.

Sugandha: Thank you, Haben, that was an excellent way to end this. Not end it, but begin this amazing journey of being all inclusive and being energized to connect and learn and understand each other in ways that are more compassionate but also authentic. So I really, really thank you for taking the time and sharing your wisdom and knowledge with our community. And we are also grateful. Thank you so much.

(Applause)