Indera: Independence and Access for All
The theme of the podcast is independent living and advocacy for people with disabilities.
Indera: Independence and Access for All
From Barriers to Belonging
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In this inspiring episode of the podcast, CEO sits down with Regional Systems Advocate, Nykk Dauzyn for a powerful conversation about accessibility, advocacy, and community empowerment.
Nykk shares his personal journey as a deafblind, neurodivergent trans man, published author, and licensed mental health counselor, while offering insight into the real impact of systems advocacy. From housing support and disability rights to assistive technology and community education, this episode highlights how advocacy can change lives one connection at a time.
Listeners will hear meaningful stories about overcoming barriers, creating inclusive solutions, and ensuring individuals and families have access to the resources and support they deserve. A thoughtful and eye opening conversation about equity, empowerment, and making communities more accessible for all.
Welcome And Interpreter Setup
SPEAKER_01This is the Arise Exceptional Family Resources Podcast with your host, CEO Bruce Drake.
SPEAKER_02Hi everyone, I'm Bruce Drake, the CEO at Arise and Exceptional Family Resources, and I'm your host today for today's exceptional talk on disabilities. I'm excited to be joined today by our regional systems advocate in support of Onondaga, Cayuga, Oswego, and Madison Counties, Nick Dawson. Welcome, Nick.
SPEAKER_00Oh, happy to be here. Hello, I'm happy to be here.
SPEAKER_02So I should tell everybody who's listening to the podcast that this is the first time we're ever doing a podcast with an interpreter. So as we work through this, just be aware that you'll may be hearing one or two people answer some of the questions that I'm asking today.
Nick Dawson’s Story And Work
SPEAKER_02So, Nick, why don't you tell everyone who's listening a little bit about yourself?
SPEAKER_00Sure. So I'm Nick. I'm deafblind, neurodivergent, trans man. I'm a published author of personal poetry and short stories. It's called the Mad River Anthropology, and there's two volumes. Two volumes. I'm peer-reviewed in publications and research papers, most notably in the Journal of Psychological Sciences. Ten years professionally, I've been working in this area, but 35 years of personal life experience. I have many, many certifications. I have a double master's degree. I'm an LMHC licensed mental health counselor. I do DBT, Dialectical Behavioral Therapy, and I'm certified non-attorney court advocate. So there's many different certifications and things I can use to help me in my role.
SPEAKER_02Well it sounds like we're talking to the right person. So before before we get into your job a little bit, I I have to ask, why is it called the Mad River anthropology?
SPEAKER_00So in poetry. So in poetry. It's very emotionally raw. It's very raw. Emotionally driven. Emotionally driven. There's a lot of feeling. There's a lot of feeling and a lot of experience and things that I want people to be able to really understand. Not just that they're reading it, but really feeling it. So that's that's why it's called that.
SPEAKER_02That's great. Thank you. Thank you for sharing that.
What Systems Advocacy Means
SPEAKER_02So I don't know if a lot of people who are listening to the podcast today understand what a systems advocate is. So what does a systems advocate do?
SPEAKER_00So in general, our goal is to approach different barriers that may come up and find a solution that makes it so that hopefully that barrier doesn't happen again in the future for individuals, for communities, or you know, for the larger community. I'd like to give um one moment and give credit to actually to the other system's advocate, Phil Friend.
SPEAKER_02Okay.
SPEAKER_00Um he works more for bigger government things, where I'm more focused on communities on a local level. And that's what the system's advocacy role is. I focus on more of niche communities, such as deaf, the deaf community, the disability community, um, the neurodiverse community, BIPEC, immigrants, refugees, LGBTQ, anyone, just anyone, you don't have to be disabled, I can help you with. But my focus on is on system change related to ADA, Americans with Disability Act, the FHA, the Fair Housing Act, the 504, and other human rights. Uh also employment opportunities, technology, ways that we can really fight for you know greater good. So I go out in the community and there's lots of opportunities to help and support people that are facing discrimination and stigma, and you know, we can educate. And that's what I do, that's what I participate, and that's what I do and enjoy.
SPEAKER_02So, Nick, are you from this area originally?
SPEAKER_00No, actually. Interesting, I was born in Puerto Rico.
SPEAKER_02Okay.
SPEAKER_00And I moved to the Bronx when I was younger.
SPEAKER_02Okay.
SPEAKER_00And then about half of my life, I stayed in Connecticut. And then the rest of my life was split between Rochester and Seattle, Washington. So I've been here for about two years.
SPEAKER_02So you've been many places across the country. How did you know or when did you realize that being a systems advocate was the job for you?
SPEAKER_00Oh, interesting. It's an interesting thing. I always thought I was going to become a teacher. So I started my education with that field, and it wasn't the quite fit. I didn't feel quite satisfied or fulfilled. So I moved to special education. And my accessibility and accommodations in that college college were not satisfied. They actually refused my accommodation request. And it caused me to fail out. And I lost a full scholarship. It was a $400,000 scholarship. And that was my first time ever experiencing any type of ADA, um, you know, a hearing in the court. Going through that whole process and then also going back to a community college. You know, and there were so many um backgrounds, majors, and options. And when I saw those, I know I knew I what I needed to do in my life.
SPEAKER_02That's great. Thank you for sharing that. Must have been frustrating at the college to to feel that you belong there from an academic standpoint, but have other reasons why you couldn't be as successful as you should have been.
SPEAKER_00Yeah, that exactly that. And that leads me every day and drives me to fight for better and you know good reasons. I have the knowledge, I have the skills, I have the experience, and I want other people to feel that empowerment, that sense of belonging, that sense of I can do this. You know, I have a place. It's not that you're sitting there in the shadows. You know, it doesn't have to be that way.
SPEAKER_02Well, thank you again for sharing. So you know, I I think when people think of systems advocacy, they think of the movies and people standing up on their chair and let's strike and let's riot. Can you walk the audience through a little bit what are the types of
Real Calls And Practical Solutions
SPEAKER_02phone calls that you get where people need assistance, and then what form can that advocacy take?
SPEAKER_00Sure, sure. Again, as systems advocacy, it doesn't have to be, as you said, the the riots, being loud, being out there, you know, facing the community. It doesn't have to be like that. It can be very small groups. You know, these I'm trying to think of an example for you. Um for example, every Friday, I get together with a grassroots group. That's the deaf and non-speaking community. And we work on smaller systems changes. Like we have a strong, unfortunately, homeless group that's deaf and non-speaking. Or autistic and non-speaking. And they don't have access to you know appropriate appropriate uh phone systems. They can't just make calls. So we're so we're working with a few local public libraries to install public video phones systems so they can reach out to businesses, agencies, resources that are essential to helping them resolve their issues. Um I get calls from the case. I mean, I get calls about another example, a good example is individuals from the hospital. Maybe they have a social work from the hospital that's calling me. Maybe they were having surgery for cancer. They wouldn't be able to speak. And then maybe they won't be able to speak because their tongue's being removed. So on the systems level, I can explain to them about assistive technology, the grants that are available to support and continue their communication independently. And then we can lead them from there and on referrals to other advocates, benefit coordinators, grant coordinators, technology coordinators, waiver services, so that they can get the sports need. You know, we need communication for that. So on a so smaller systems level, I can show that social work team how to get the assistive technology, how to use it to maintain communication and let the person independently communicate. So things like that.
SPEAKER_02So go back to the example of the person who is in the hospital. What happens what happens to that person if they don't know to call Nick Dawson for assistance?
SPEAKER_00So unfortunately, we see that happen many times. And eventually it catches up. Or word of mouth eventually happens, and it's tough. It really is. It really is tough. I'm trying to think of a good example of I have one client specifically that had also had a medical crisis and they had sudden blindness. That's that's a life-jarring, it's a life-jarring change. And where to refer them. No one knew where to refer them, how to help them, and it had been two years. So unfortunately, the work is never completely done. Word has to get out there more. I'm not disappointed. I'm it's not just me in this community. There are other advocates and resources out there, agencies, businesses. But again, part of my mission is to educate the community on that system's level. To say this is available, what resources we have, what we can do, what options, and empower, empowers the word.
SPEAKER_02So again, just uh give me one good, and I think you have a bunch of them, and I think you've touched on some. Give me one good success story. One good
Fair Housing Win With Extra Time
SPEAKER_02story where the a person has approached you or somebody who works at a Rise, an EFR, and you know, we clearly were able to help them resolve the issue that they were having.
SPEAKER_00Sure. So one of my recent favorite examples is related to the 504 and Fair Housing Act. It's kind of a two-part story. So every Thursday I help host a landlord tenant workshop. It's for both supporting landlords, their questions, their rights, their things related to maybe they have say I have a tenant that's requesting certain things. And then tenants, if they need accommodations and accessibility, we can talk about that. So I did have one client and they signed an agreement for an eviction. And during that period of time, they were supposed to be moving out. And then fortunately, the family member got very, very sick. They had kidney failure, their kid got very, very ill. And they were in a very bad car accident as well.
SPEAKER_02Wow.
SPEAKER_00So I had to have a meeting with the property manager to explain their rights from an eviction perspective that they had signed that agreement, but also the FHA says that there are qualifications of extreme disability and disability support that qualify that person and the family to have what's called over a holdover so that they can stay without being evicted. They have to have provable recourse on what they're doing. So I facilitated the communication between the landlord and tenant, and we were able to get an agreement and we got them an additional 90-day extension. And during that 90 days, I was able to help from a systems level to get the family connected to DSS, get temporary financial assistance, and aerodal, uh, connect them to other charitable resources. We got them like help with security deposit. We got them into the rapid transition program that we have here at Arise EFR to just support them and connect them to other advocates. We got them benefits coordination for SSI, all sorts of resources. There were so many things. And that's not just something I can say I did. It's as a system advocate, I was able to bridge the landlord, the tenant, but connect them to all these other resources that we have. So at the end, the people were empowered. And they can survive on their own.
SPEAKER_02Nick, I feel like I could talk to you for hours. I would love to hear all of your success stories. Unfortunately, we're running out of time. So I understand. One last
Who Should Reach Out And How
SPEAKER_02short question. There are people out there who are going to hear this podcast who have a variety of different life situations. And again, you you talked about the types of people that you support. Who are the people who should be reaching out to you for assistance?
SPEAKER_00Anyone. Anyone never doubt that your needs or your questions or your concerns or your observation maybe you see something out in the community. I mean, get a hold of me. I'm never going to turn you down. If I'm not qualified, if I'm not the right person, I'm going to at least make sure you're connected so that I can release you to the next person.
SPEAKER_02Nick, how do people get a hold of you?
SPEAKER_00So you can directly contact me on my accessible three phone number, which is 315-2347-5137. If you call that number, you will be connected to an interpreter. Don't worry about that part of things. It's still a direct connection and direct communication. It's kind of like today's commun uh conversation. The interpreter will facilitate our phone call. If you prefer text, my text number is 315-994-7161. Or my email is N D A U Z Y N at contact EFR.org. But if you aren't able to connect with that information, you can just contact our business directly and the the general number and they
Closing And Where To Learn More
SPEAKER_00will get a hold of me.
SPEAKER_02Nick, thank you so much for finding the time to talk with us today. Ladies and gentlemen, that was Arise Exceptional Family Resources Regional Systems Advocate Nick Dawson. Thank you all for listening, and we hope that you join us next time as well.
SPEAKER_00Yes, thank you for your time today.
SPEAKER_01This has been the Arise Exceptional Family Resources Podcast with CEO Bruce Drake, recorded and produced at the WCNY public broadcasting studios. For more information, visit our website at contactefr.org. You can also follow us on Facebook. Thank you for listening.