Reid My Mind

TR:
Greetings Family! Welcome back to the second episode of the first season of 2022, Doing Your Thing with Disability.

— Music begins – A drum solo that loops, stops DJ scratch into a cymbal crash.

My name is Thomas Reid, host and producer of Reid My Mind Radio, the podcast bringing you compelling people impacted by all degrees of blindness and disability.

I’m excited to bring you today’s episode so I’m not going to say much in this introduction.
However, I know you’re going to dig what we’re about to get into so I’d like to encourage you right now to just go ahead and follow or subscribe to the podcast.
Seriously, what are you waiting for! Whatever app you’re using to listen right now, there’s something that says, follow or perhaps subscribe.
Hit that to make sure you don’t miss an episode.

I’ll take it from there!
— Reid My Mind Theme Music

Adriana:
Hi, I’m Adriana Mallozzi, founder and CEO of Puffin Innovations, we are creating hands free access to consumer electronics for individuals with limited mobility in their upper extremities. My pronouns are she and her. I am a Caucasian woman with a round face, ear length dark hair, and wearing a black T shirt with the words not impossible written across the chest in white and I am in a power wheelchair

TR in Conversation with Adriana :
Why did you wear that shirt today?

Adriana:
It really represents I think my attitude with regards to what I want to do in life.

I’ve never been the type of person to take no for an answer. I’m realistic. I’m not a surgeon because I can’t use my hands.

It just really resonates with me and my attitude. And what it means to be a proud, disabled person showing that nothing can really stop you from doing whatever it is you want to do.

TR in Conversation with Adriana :
Can you just summarize your experience with disability?

Adriana:
Sure. During the birthing process, I stopped breathing. So the lack of oxygen caused brain damage, hence, I have cerebral palsy. I’m a spastic quad and I use a power wheelchair.

CP varies so much. It manifests in so many different ways that you would never know from one person to another, that they have the same diagnosis.

TR:

The diagnosis is what it is, but the person is who they were in their past, who they are in the moment and who they become in the future.
In each of those periods of time, there are things that impact a persons way of thinking.
Two things stand out about Adriana’s past that influence her belief of what is possible.

Adriana:

I am a child of immigrants. So I grew up going to Italy, to visit family, I still have first cousins there. Growing up, we would go spend the summers to see my grandparents. So travel was a big part of my life.

TR:

Adriana’s mom worked as a real estate agent and travel agent.

Adriana:

Just because it gave her the flexibility, she needed having a young family, especially for me as a child with a disability. She’d always be running around, having to take me to PT or OT or whatever.

She would win a trip for to, and then she would add my sister and I and we get to travel.

We went on cruises, and we got to go to Bermuda.

— Sound of an airplane taking off.
— Music begins – melodic horns slowly blow as a woman vocalist sings “higher” leading into a kick dram and a mid-tempo hip hop beat.

So I think it was just very inherent, it was in our blood. Traveling is just something that we love. My sister has made it into a job where she gets to travel around the world and experience a different culture

TR:

That’s her little sister, Mikaela. Professional dancer and four time EMMY Award winning host of her own travel show, Bare feet with Mickela Mallozzi.

I guess traveling without shoes is dangerous. (I don’t think that’s what’s she’s doing.)

Traveling as a power wheel chair user comes with some specific challenges.

Adriana:

When I travel, especially overseas, I don’t bring my power chair, just because it’s not as accessible in other countries. And it’s just easier to have a manual chair, when most of the countries are not wheelchair accessible, especially my own family’s home, my grandparents, its hundreds of years old, it belonged to my great, great grandparents and you know, it’s just not accessible. So I would travel with my manual chair, and when I’m in my chair, I literally can’t do anything myself.

TR:

Contrast this with her first experience taking her power chair overseas.

Adriana:

Also, the first time I flew overseas without a family member, I brought my PCA and I had to figure out all the logistics on my own.

That was the first time that I had ever done that in my life and it was amazing.

They really put a lot of thought into design with accessibility in mind.

You know how here, the elevator buttons are all literally at the door. If you use a wheelchair, you really can’t reach those buttons by the door because your foot rests are in the way and you can’t get close enough. Well, in Germany, all the buttons are on the side, on the wall. So you can easily reach them.
They also have not only a button to call the elevator at the door itself, but they also have free standing posts. So you can angle your chair in any direction and hit it however you can hit it. They did the same thing with automatic door openers, as well. And so I was so independent in there that I literally dreamt about being back there when I got back home.

TR:

Aware of the problems that power chair travelers experience, Adriana had a plan.

Adriana:

We bring a big roll of that wrap. How they wrap pallets? you know that plastic.

As soon as I get out of my chair, we put anything that are external to the seat of my chair, we put it in the seat of my chair, and then literally wrap my chair.

And so that has worked.

TR:

On the way to Germany at least.

On the return trip, as soon as they finished wrapping the chair,
Adriana and her PCA were told to unwrap because the chair needed to be tested.

It was taken but no one would speak with Adriana or her PCA.
Nervous about missing their flight and subsequent connection, they finally learned of the problem.

Adriana:

They’re like, Yeah, your chair tested positive for explosive.

We had to wait for the police to come. And then they were like, You need to take the battery. I was like, you can’t take the battery out, you don’t take the battery out.

They literally tried to tear out the battery. Like Luckily, they couldn’t figure out how to open anything. But they had snapped pieces. So there were broken pieces in the seat of my chair because it was like they were clawing to get to the internal electronics of my chair. I think it would have been worse if it wasn’t wrapped.

TR:

The dream of independence for people with disabilities often includes some nightmares.

Adriana:

They put my chair on the lift from the gait of the plane to load it down below.

and a person who was loading bags, he was literally throwing in like chucking things on top of my chair. And I was having a heart attack. I could see it through the window and I’m like, oh my god. We definitely took pictures and videos and my chair was a little broke like it wasn’t working properly and you know these chairs are 500 pounds so it’s not like it’s easy to push it.

TR:
joy and pain of traveling as a disabled person!

— Music Ends

The second influential component effecting Adriana’s belief of what is possible? Early exposure to technology.

Technology>
Adriana:

I began, PT and OT, or physical therapy and occupational therapy for those that don’t know what PT and OT stands for. at a really young age, I was diagnosed shortly after I turned a year old around 12 months or so. And soon after, we were sent to Easter Seals.

It was my OT who introduced me to a piece of technology that allowed me to use the computer, for the first time to do anything for the first time independently.

This was back in about83 or 84. I was about maybe seven, eight years old.

All I did was type, I type my name, and maybe some numbers. But just being able to do that, and be able to do something by myself for the very first time ever in my life.
It really hit me at that moment. I was like, wow, technology is going to be the key to my independence. Technology will be the way I will be able to do everything I ever wanted to be able to do.

TR:

And then there’s the DIY, Do it yourself attitude.
Adriana:

my father was in construction, he was a carpenter. I would always see him build. I think I got that problem solving. sort of mentality. Most people with disabilities, we have to adapt on the fly all the time. We have to figure out ways of doing things that the average person does not. And we always have to be at least two to three steps ahead. There has to be a Plan B, C, D, in case, X Y and Z goes wrong.

TR:

And when they go wrong, understanding the need to advocate for yourself.

Adriana:

My parents really had to struggle financially to get me what I needed, like the basic things that insurance considered luxuries like a bathing chair.

I can’t sit up by myself. So until I got that chair, I had to lay at the bottom of the tub. And I would be really creative and like, Yeah, I’m cool. toys like, I left pillows or floaties, or whatever, just to make me comfortable. So I wasn’t banging against the sides of the tub or hurting myself on the tub?

Of course, insurance? To be able to bathe safely and comfortably was a luxury.

My power chair I got when I was about eight years old. Me being able to be independent and move on my own was a luxury, according to the insurance company. So luckily, I think part of it was covered.

They just had to find ways to provide to get what I needed. And I’m really grateful that I had parents that did that.

TR in Conversation with Adriana :
Is that still, the situation with insurance with they treat those things like, luxury?

Adriana:
there are places still in the United States where people have to still fight for it. And yes, they still consider a luxury. But I’m lucky to be in the state of Massachusetts, and have the benefits and have not had to struggle as much as an adult in a different state to get the equipment that I need, but there are people in this country that that still have to fight, but still get subpar equipment, simply because insurance won’t cover the actual equipment that would be more suitable for that person.

I just don’t understand how people can be okay with that. I don’t understand how people that work in the insurance companies can have policies that allow that to happen. These are human beings and to treat human beings in that way, I just don’t understand.

— Music begins, a funky electronic dance track with lots of digital processing sounds and a funky groove.

TR:

The more you know how much it benefit’s a person, the more difficult it is to accept that it happens.

Adriana:

when I was older, let’s say my mid 20s was the first time that I had technology that I was able to turn on the lights to change channel on the TV, to open my door to my apartment. That was huge.

For the average person, it just sounds so basic. And these things excited me and I was so lucky. And I was in my mid-20s. And that was the first time I was able to do any of that by myself.

TR:

It doesn’t sound basic to me.
Adriana and I met as a result of inaccessibility.
It was December 2020 and I was trying to make sense of the social audio app Club House.
I accidentally hit a button that started up a room.
Honestly I freaked out, I had no idea who was going to join.
While searching how to quickly close the room someone popped in.
Shout out to Daniel from Singapore. We got to talking and then Adriana came into the room.

Adriana:
I joined clubhouse December of 2020, when everyone was locked down.

Initially, I was just checking out all the tech rooms and getting a feel for what was on there.
TR:

December 2020 was still considered early in Club House time.
There were a fair number of people using the app even though officially it was in Beta.
There was a lot of everything, good conversations to scammers, and definitely inaccessibility.

While in a room with some discussion taking place about disability Adriana didn’t like what she was hearing.

Adriana:

Special needs, and differently abled and Handi capable and all those god awful euphemisms instead of the actual word disability. And we’re like, Okay, this has to stop. Let’s do a room about disability and about language. And that’s how it started.

TR:

That room led to the creation of a club.

Adriana:
I was trying to come up with something clever, for a club name.

I read, 15% of the world’s population has a disability. And I was like, Oh, my God, we’re going to call it the 15. Then it sounds really exclusive. And cool, it’s Wow. And people will be like, Oh, what is this 15%, right, like, I want to be part of the 15.

TR:

There were some really great conversations throughout the rooms, from those hosted by the club to those from other members.

We as a club along with some cool allies (shout out to Glenn with two n’s) played a big role in advocating for improved access to that app,
making certain to voice concerns from the perspective of all users with disabilities.
Literally, all we wanted was to be included in the conversation.

Music ends.
TR:

Hey y’all, I’m cutting into the flow of the episode.
It’s time to announce the winner of the
February Socially ReidSponsible Instagram Giveaway.

Last time,
I told y’all about Annie.
A friend of the family who wanted to come on board and
help manage the Reid My Mind Radio Facebook and Instagram pages.
Last time Annie was under the weather…
while I knew the sun would come out…
I was hoping to get her on the podcast and ask…
Annie are you ok? Are you ok. Are you ok Annie!

Ok, I’ll stop before Annie decides to get her gun…

The winner of the February Reid My Mind Radio Instagram giveaway is…

Congratulations @Malic_acid,
Enjoy your very own Reid My Mind Radio
coffee or tea mug.

Now back to the episode…

Music ends with a bouncing base…

TR in Conversation with Adriana :

What was your first experience with having to advocate for yourself?

Adriana:
I liked pushing boundaries. But I was also very shy. Growing up, my teachers didn’t even know I could speak because I was so shy.

I started opening up more when I was in middle school and high school.

It was freshman English, and I had to write a paper. I decided to write about how, as someone with a disability, who took all honors classes, I had a one to one aid to help me turn pages or write notes for me who didn’t understand English.

TR:

Adriana literally would have to spell out things she wanted the assistant to write.
Meanwhile, the teacher is moving on with the rest of the class.
Could you imagine how frustrating that would be for a 14 year old?

She decided to write about it.

Adriana:

I knew once the essay was handed in, and I would go down the halls, I knew all the teachers knew, I knew the administrators. did and they were all talking about and I think that was my first like, official. My self-advocating for myself.

TR in Conversation with Adriana :
What lessons did you take away from that?

Adriana:
It felt good, actually, to cause a ruckus.

It was really obvious that they underestimated me. Even though I was in honors courses. I think it was really clear that because I was shy, because I never really spoke loudly or did anything like that all of a sudden, I wrote this paper. They had an insight to what was really going on inside my mind and how I was really feeling about the situation.

TR:

After being assigned a new aide, she knew her words could make a difference.

In her senior year in high school, Adriana wanted to work on the year book.
She knew she could, everything was computerized at this point.
But she was told she couldn’t.

Adriana:

Because it’s on the third floor and the elevator doesn’t go there. After four years of being in high school, I had no idea that there was even another floor that I had no access to.

Someone that I knew that was on the school paper, decided to interview me about it. A year or so later, they fix that.

TR:
Years later, Adriana found herself working as the editor of a newsletter at the Massachusetts rehabilitation commission.

Adriana:
it was called the consumers voice. Up until when I took it over, it was mostly just a regurgitation of what was on the DOJ website and not really the voice of the people.

I said, we’re changing that.

Music begins –
They allowed me to assemble a group of individuals who were involved or who were consumers of Voc Rehab. And people were also allowed to submit their own stories if they wanted to share an experience, both negative or positive.

TR:
At least that was what she thought.
It wasn’t until one consumer sent in a not so nice letter about their experience that tested the policy.
It landed her on a call with the Executive Office of Health and Human Services defending the consumer.

Adriana:

I said, Excuse me, but this is called the consumers voice. It is a factual story. No one is being called out by name in this story.

We went back and forth a little bit, and it got published.

TR in Conversation with Adriana :
Why was the idea of having the voice of the consumer being heard? Why was that so important to you?

Adriana:
It would be an injustice, if it was called the consumers voice and not having no voice of those people in that publication. It was wrong. It was so wrong on so many levels when you didn’t actually broadcast those voices and those stories and so it was really important to me to be true to what the name stood for.

TR:

In her job at a Day Rehab Center in charge of coordinating wheel chair evaluations, She found herself often advocating on behalf of others.
Sometimes that just means informing people of the process and their rights.

Adriana:
So most people don’t know this. But when you’re wheelchair shopping, it is your right, to test drive multiple chairs, it’s just like buying a car.
You spend most of your time in this thing. And it needs to be right for you.

TR:

Advocating on behalf of another person can be tricky.
Especially when you sometimes share medical professionals.
Like the time an OT didn’t provide a consumer with the chance to test multiple chairs.

Adriana:

So I knew this person, both professionally as well as someone who had helped me in the past to get equipment. And so I called her and said, hey, you know, I really think that he should buy this other kind of chair. I think he would benefit from it.

And she says,

— Music ends.

Well, you know, I didn’t think He needed to try anything, because he has a cognitive disability. And I was thinking at that moment, God, you are so lucky that his mother did not just hear you say that. And you’re also so lucky that I could not reach through this phone and rattle you.

TR:

I’m a big fan of this part of Adriana’s personality!
But fortunately for all involved, she has a really good head on her shoulders.

Adriana:

We spoke for a while and convinced her that we should have another wheel chair eval. We did it at the clinic not on site.

TR:

Mind you, this wasn’t in an official capacity. She took off to attend the eval in order to make sure this person received the appropriate service.

Adriana:

Prior to using this chair, he would crash into things all the time.

In this chair, he drove like a pro. It was also a standing chair. So he was able to stand and read, his mom was in tears. And it was just the most amazing and I was so happy that he was able to get what he actually needed and what best suited him. And then the OT came over after and apologized to me afterwards.

— A bit of silence…

“I’ve always been that type of person where I want to try to figure out how to make things better. How to make things easier for other people, not just myself.” – Adriana

TR in Conversation with Adriana :
Let’s go to another form of your advocacy. It’s what I think is sort of your natural interest in technology, combined with your empathy for others. I see all of that combined to make the beginning of Puffin innovations.

Adriana:

I’ve always been the type of person to have ideas and want to improve upon existing tech. And right after I graduated college I was sending out two different kinds of resumes. One was the typical resume that you would send to a company. And then I had a resume called assistive tech resume. And I would list all the things that I was experienced in using and New England. And I would apply to all these companies that I had used their equipment and I looked up to and it was a dream of mine, to work for a company.

TR:

Adriana had no entrepreneurial ambitions.
She just wanted to work for an Assistive Technology company that was serving people with disabilities.
That was until she receive word about an event.
]

Adriana:

MIT was looking for people living with disabilities, who had an idea, a solution to a problem that they themselves are experiencing. I was like, oh my god, this is like a dream come true. I get to go to a hackathon. At that point, I had never been.

I was just on cloud nine because I was like, oh my god, I have this opportunity to go to MIT, hang out with all these geeky people and geek out together and just be around all day. So I submitted my solution, it didn’t have a name, but it was the Puffin.

TR:

She along with about 15 other applicants were selected to participate in the hackathon.

Prior to the event, a dinner was held to give the co designers, that is the MIT coders and those with the ideas a chance to meet and connect with one another.

Adriana:

It’s kind of like speed dating.

The students will go around and meet each of the designers, and find more out about what it is that you want to do. This group of students came to me and they never left.

Literally, they had laptops, we were looking at parts, like we were already figuring out what we needed to make this happen.

TR:

Each team had an opportunity to request parts and technology prior to the hackathon.

Adriana:

Luckily, there was this person who he is now a puffin advisor, he had this big chest of parts. And if it weren’t for him, we wouldn’t have been able to build it at all. because we didn’t get any of the parts that we had ordered.

The students were amazing, because they really listened to what I had to say. I think that’s what made our team so successful. We were willing, and able to take each other things, and put that together, and put it in a way that works. We never dismissed anyone’s idea or anything.

We ended up making a working version, I think that’s why we won first place.

We got so much press. We were even in the New York Times, which was amazing.

TR:

Already motivated to get this product out to others who wanted more independence,
Adriana began receiving emails from people around the world asking that very question.
She was thinking about patents and funding while the student’s went on to complete their course work.

Adriana:

A good friend of mine who happened to be writing her thesis. She was getting an MBA back in 2016. And she was writing a thesis on hackathons.

She said, you had a successful hackathon, so I want to interview you.
When we were done, she was like, Well, what’s stopping you from doing that from making it into a real thing.

That was really her and I taking the time to just look up applications, learn what was out there and then apply to all these funding opportunities.

TR:

The idea that began after receiving an email in 2015 started to look more like it was turning into a real business.

Adriana:

It just all fell into place in 2017. And we got a $200,000 grant from the VA. It was April Fool’s Day. I kept looking at the email. I’m just like, This is real, right?
It was just surreal, like the most surreal experience, because we’ve never done anything like this before.

It really worked out because then we got into mass challenge. And that really propelled us forward because we didn’t have space, we didn’t have anywhere to go to work on this.

TR:
The Mass Challenge is a business accelerator program in Massachusetts.
In addition to funding and networking opportunities, they provide access to production space and other resources including equipment and people.

Adriana:

The people that would walk in and out of there were just people in the high tech industry that you would never otherwise ever meet in your life. And it was just an amazing experience. We also, as a result, something that happens here in Boston called inbound, that HubSpot runs. And we happen to have been part of that challenge. We got free tickets to HubSpot, HubSpot, or to endow and that year Michelle Obama was the keynote speaker. We got to go and it was just the most amazing thing ever.

TR:

Just when things are going really well, (Pandemic! )Covid 19.
Unlike other tech companies that were able to thrive during the pandemic, Puffin is a little different.

Adriana:
It’s a physical product.

* testing this here *
Our device is actually a mouth operated wireless input device. It’s just a fancy way of saying it acts as a mouse. So for people like myself, who can’t use their hands, they could pair our device with any Bluetooth enabled devices, so like your computer, or your cell phone, or your tablet, and then have full access to that device.

I know several people who don’t even have mobile devices, especially back when I started. That’s because they physically can’t interact with the touchscreen. That is why this was so important.

We also have an app that goes with the product, but it interacts with the device.

It’s really a hard thing to get parts that are not from overseas. And that’s where a lot of our components are coming from. We were down for a good supply chain. But now we’re ramping back up again.

TR:

Helping to build up some of that momentum is winning the ServiceNow digital workforce challenge along with acceptance into the Verizon for good Accelerator program.
Adriana:

Which is super exciting, because you get to work with these tech experts, from Verizon.

A big part of our device is the portability, the connectivity of it, wireless. And so having this opportunity to work with a communication giant, like Verizon, and leader in wireless technology, which then we will be able to incorporate in our device is going to be pretty amazing and really bring it to the next level.

TR:

Adriana says Similar products on the market haven’t seem much in the way of innovation because there’s little competition.

Adriana:

they have no reason to actually change it. So we’re changing it!

TR:

By incorporating artificial intelligence or machine learning.

Adriana:

I wanted this device to recognize, hey, this person is having a little more difficulty in doing this or that, or is struggling with moving in certain ways. So let me adjust the sensitivity, or let me adjust the pressure that is needed to go in this direction, but not in this direction.

TR:

By the end of the program with Verizon,
Adriana would like Puffin to have a product ready for sale in a beta phase in order to generate user feedback.

By the way, the name Puffin is like a shout out to the bird of the same name.
The devices mouth piece resembled the bird’s beak.
That beak you can say, is a form of assistive technology.
It enables them to carry food to their baby back at the nest.

Doing her thing with disability, is what separates Puffin from other solutions.
Adriana not only understands the value for herself, but seems just as excited for what that access brings to others.

Adriana:

I don’t know what I do Without accessing my cell phone. I can control everything with my phone, now. I can control the TV, I can control the lights with my phone, I can do my banking, I can do my shopping, I can read a book, right? I can, whatever, make phone calls, etc. You can literally do everything with a mobile device. So for people with disabilities, if you have access to your mobile device, you literally have access to the world. And that’s what’s really important to us. It’s giving people that opportunity to have access to things that they otherwise would not have access to.

TR in Conversation with Adriana:
Ok, How do I say this? Because of all the things that you do, your willingness to share, and help others the way you do your thing with disability. You Adriana Mallozzi are an official member of the Reid my Mind Radio family welcome to the family, Adriana.

Adriana:
Thank you! I’m honored to be a member.
TR in Conversation with Adriana:

So how can people learn more about the Puffin, about you? All of that.

Adriana:
So you can find more about Puffin at Puffininno.com So that’s Puffin like the bird and inno.com. Or @Puffininno on all social media platform. That is our handle. If you are on Club House come and join the 15% Club.

For me it’s just AdrianaMallozzi is my handle on on all social media platforms.

TR:
I started to give credit to the lack of access within the early version of the Club House app for my chance to meet and get to know Adriana.

It’s like giving credit to inaccessibility, poor treatment and service for the strong advocacy,
problem solving or management skills you’ll find among people with disabilities.

No! I’m not crediting the negative.

The energy we each give off works to bring people in and out of our lives.

Adriana and I were both on the Club House app, simultaneously trying to figure some of the same things out.
In fact, some of the same access issues that impact her were impacting me as a Voice Over user.
It wasn’t disability specific.
Perhaps that’s something I needed to hear.
I may have been seeking that without even knowing.

Maybe you listening here today needed to hear the words on Adriana’s shirt; “Not Impossible”. That’s really an energy that I personally want for anyone listening, the energy I want for myself.

Yes, we can dream big.
I just want to hear more from those achieving without having to compromise any part of themselves.

I’m tired of conversations about overcoming CP, blindness or disability in general.
I’m here when you want to talk about society overcoming it’s need to put up barriers,
it’s inaccessible websites and technology or
unwillingness to hire, give opportunities to or in any way include the disabled community.

I’m here for conversation with people like Adriana who want to talk about pursuing goals, making dope enabling technology.

I’m here when you want to talk about Doing Your Thing With Disability!

And you know where to find me right?
That’s wherever you get podcasts. If you’re on Facebook and Instagram, that’s @ReidMyMindRadio on Twitter @tsreid.
Or slide on over to ReidMyMind.com and you can find transcripts for our episodes.
Just make sure you remember, that’s R to the E I D!

— Sample (“D!”) And that’s me in the place too be! Slick Rick

Adriana:

Like his last name!

Audio: Reid My Mind Outro
Peace!

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