Reid My Mind

— Ambient music begins…

TR:

Greetings Reid My Mind Radio Family!
Welcome back to the podcast bringing you compelling people impacted by all degrees of blindness and disability.
You know, we’ve been here since 2014 so make sure you take a look in the archive if you’re new in these parts.

My name is Thomas Reid and I get to serve as host and producer.
I like to consider each of these individual episodes as a part of a larger collective story.
If you know anyone new to blindness or disability in general, please go ahead and let them know what’s happening here.
I’m confident that they would find a lot of value in the lived experiences stored in these audio file (and transcripts).
All just waiting for the right person.

Today’s episode is the latest addition to this growing archive that will not disappoint.
So let’s get down to it!

Audio: Reid My Mind Theme Music

Qudsiya:

My story of blindness is, to take a page out of Michelle Obama’s words, it’s a story of becoming.

My name is Qudsiya Naqui. And I am a lawyer and I’m based in Washington DC. I use she her hers pronouns.

I am a South Asian woman. I’m quite petite. I’m about five one. Right now I have sort of long, dark brown black hair that’s very long because of the pandemic and I haven’t been able to cut it and have kind of medium brown skin and brown eyes.

TR:

Qudsiya is the host of Down to the Struts, a podcast that explores the inner workings of
disability design and it’s various intersections.

Today, she shares some of the transformational experiences along her journey that helped shaped her view of blindness.

At 2 years old, Qudsiya was diagnosed with a congenital degenerative condition.
By the time she began reading, standard print was sufficient.

qudsiya:

But I had trouble in dark and dim places.

We were blessed and fortunate to be able to live in homes that worked for me. That had lots of sunlight, and we had lots of extra lighting. So that was the way that we kind of help make the environment accessible for me.

My mom was proactive and had me in sort of rehabilitation services with the state agency.

— Melancholy Ambient Music begins
TR:

That’s the New Jersey State Commission for the Blind, where she received mobility training and other blindness skills as a child

Qudsiya:

My usable vision was so good when I was young that I wasn’t quite understanding sometimes, like, why I had to use a mobility cane because

oftentimes, the trainer would come during the day, and I could see really well during the day.

When I reflect on it, I’m like, why didn’t they train me with the cane? At night? When I actually couldn’t see and then I would understand the benefit of it.

I had a hard time explaining to people what my situation was also because I present as sighted I don’t fit the sort of stereotypical appearance of what a blind person looks like. And so I sort of passed for lack of a better word because I didn’t have a vocabulary to talk about my disability, I didn’t even use the word disability, disability wasn’t even in my lexicon when I was a child and a teenager and even a young adult. I really struggled.

TR:

As a child, struggling with bullying and making friends.

Qudsiya:

I do think it shaped a lot of my identity. I was quite introverted, I love to read. It definitely did shape who I was when I was younger in slightly more negative ways, I felt like it was something I had to hide and that I had some degree of shame about. That really affected my willingness and desire to engage socially and to make friends and to put myself out there.

TR:

There are two main perspectives in viewing disability.
Whether you’re familiar with them or not, you may recognize your own way of thinking.

The medical model. This approach sees the problem as the illness, disease or injury. The focus is on fixing the person.

Qudsiya:

I started losing vision really quite rapidly kind of at the end of college when I was 22. At that same time, there was a experimental gene therapy. That became available and my parents really were encouraging me. They had very good intentions, and they love me very much. They wanted me to feel good about myself and be successful. And their pathway towards that was, you know, to have this therapy that would help me either gain vision back or halt the degeneration.

I did enroll in the clinical trial. I really believe that people should have choices about how they want to live, I have a little bit more healthy skepticism about that, because so much of it is rooted in ableism, which is a term that I use a lot now, but was really unaware of at that time.

— Ambient music ends

TR:

That’s the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior.
It assumes that disabled people require ‘fixing’ and
defines people by their disability.

Qudsiya says she’s unsure if the therapy has helped reduce the degeneration but notes she didn’t regain any vision.
She did however slowly begin inching toward that alternative way of viewing disability, but first, she had to go through some things.

Qudsiya:

I went through a really dark time in my 20s, just trying to like sort of, quote, fix myself,

When I was young they told me that my vision would be stable, you know that I had nothing to like, quote, worry about, and it would just be the same as it was. And that was pretty doable.

TR:

While preparing to enter Law School at Temple University, Qudsiya began seeing a new doctor who explained that her vision loss was degenerative.

Qudsiya:

That really explained what I was experiencing in the two or three years prior, reading was starting to become really difficult.

Law school, is very difficult for a whole host of reasons. And it’s a difficult environment, it’s just a lot of work. It’s very hard. And there’s a lot of reading, like hundreds and hundreds and hundreds of pages of reading a week.

TR:

Since grade school, Qudsiya prided herself on her ability to study hard and have the grades to reflect that effort.

Her vision and grades both deteriorating she considered dropping out.

Qudsiya:

And somehow, I didn’t, I had a couple of really amazing professors. And then I got a really cool internship at the ACLU of Pennsylvania, the summer after my first year, because I happened to meet the Legal Director at a career fair. And we just totally hit it off. And she was an incredibly supportive person. And between her and a couple of my professors, I just, I stayed and I didn’t quit, and I didn’t give up. I started to explore text to voice software and the different kinds of technologies that were emerging. Blind people have been using it for years.

I kind of taught myself to learn by listening because I’d always been a visual learner. And I had to completely transform the way my brain worked. And I was able, it took me a long time. And it was hard, but I did it.

TR:

The grades improved, her self confidence returned and she was making strides in her blindness journey.

Qudsiya:

Oftentimes, a lot of sighted techniques are foisted on you. Like there’s always the imperative for you to use your eyes. But that was the first time I started to realize you know what, like, it’s not about like forcing me to use my eyes if my eyes aren’t the most efficient way to get something done. And so I started to like embrace like new Non sighted ways of doing things which made me a lot more efficient and made things easier for me.

The day that I said, I need to use jaws 100% of the time, like changed my life.

TR:

But what about accepting that white cane?

Qudsiya:

There was so much stigma for me associated with it. Shame.

I got myself into real difficulty. There was one time I was in Penn Station, and I fell on the train tracks.

TR:

Thankfully, the train wasn’t moving and someone quickly pulled her up.

Although already familiar with proper cane technique, Qudsiya wasn’t a practicing user. Living in New York City at the time, she
reached out to the New York Commission for the Blind and got herself an Orientation and Mobility instructor.

Qudsiya:

I said, I need you to force me to use it in front of you until I get to a point where I’m okay with it in myself.

We worked every day a couple times a week for like an hour and little by little after a while, I started to just feel comfortable with the cane.

I went from someone who would carry the cane folded up in their purse, never even think about it, to a person who now uses a cane pretty much all day all the time and never is without it and has a very healthy relationship with it. That took a long time. And it took a lot of struggle and a lot of moving past my own stereotypes and my own ableism

TR:

Qudsiya offers some additional thoughts on what could be helpful in decreasing the stigma associated with blindness and disability.

Qudsiya:

There’s such a lack of education in a young age to a culture eight children to the concept of disability and like these disability positive messages.

I just remember in high school I never learned about the ADA, I never learned about the Rehab Act, I never learned about disability rights history.

I feel like if I had existed in an environment that was giving me all these positive messages and welcoming messages and accessible messages about who I was, and the fact that my disability was okay. I think my outlook would have been quite different. But I was in an environment where my disability was sort of invisiblized. I see that changing now for young people. But I think we have a long way to go.

TR:

Another transitional moment for Qudsiya along her blindness journey came when she experienced job discrimination.

Qudsiya:

That was the first time in my life, I had been exposed to disability rights and Disability Law and the civil protections that are available to people to prevent against discrimination. And I didn’t really understand that I had been repeatedly discriminated against in various work settings until I had this experience that became so extreme that I had to get an advocate to help me.

TR:

She credits that person with changing her life.
Helping her become clear about the problem and to see things from a different perspective.

Qudsiya:

Okay, it’s not me, that’s the problem here. It’s the system. That’s the problem. And it’s a system that is not designed to give me access, and I need to fight for that access.

— Music begins – a bright melody that moves to a driving beat…

TR:

The social model of disability.

This views disability as a part of life and not the problem.
Rather recognizing that society erects barriers in various ways that can limit opportunities.

Qudsiya not only learned how to advocate for herself, , she found a community of people who also had a positive outlook on their own blindness and disability.

Moving to Washington DC from New York City, she was introduced to another Blind Lawyer.

Qudsiya:

She and I actually connected over something completely unrelated to blindness. We connected over the fact that we were both athletes. She was a cyclist and runner, and I was a runner also.

She was starting up this sports group in DC called the Metro Washington Association of Blind Athletes. And she kept encouraging me to come and try out tandem cycling.

I hadn’t been on a bike since I was a little kid.

I didn’t know anything about tandem. I was like, this is gonna be a disaster.

Finally she pushed me and I went and I got really into it, I just fell in love with it.

TR:

That led to other sports and activities like adaptive rock climbing,
guided running and most importantly friendships with other Blind people.

Qudsiya:

That was really transformative, mostly because I never had Blind friends in my life. And so I suddenly had this massive, wonderful, supportive, fantastic community of other Blind people that were doing all sorts of things had all sorts of professions came from all different types of backgrounds. And we just had fun together. And we support each other.

TR:

That support is invaluable. From the practical to the emotional, helping you become your best self.

Qudsiya:

I’m like a b minus blind person, and I’m trying to get to an A plus.

TR:

I think she’s being tough on herself.

Even if we’re not being graded, a community of people to learn and share with along any journey is important.

Qudsiya:

I started on that journey kind of later in life, as opposed to some of my peers who were born blind or lost their vision when they’re really young. They really became resources to me, and I just started to see the world really differently.

I’m also part of another new group that just started last summer. It’s called WOC World. W O C. It’s a group for blind women of color – a virtual community of blind women to support blind women of color.

TR in Conversation with Qudsiya: 39:15
I always like to highlight the importance of meeting people. Because I think it plays a big role. I always bring it back to the podcast, because that’s what this podcast is all about. Not everyone is in an area where they can actually have access to all of these people. And so that that transition process that I think really is impacted by meeting people may take even longer because you have no sort of model of what blindness can actually be.

— Music ends with an ambient fade out

TR:

Qudsiya is a fellow podcaster. She’s the founder and host of Down to the Struts.

Qudsiya:

A strut is like an engineering device that you’d use to hold stuff together.

It’s sort of evokes this idea of like, what are the building blocks? What holds the world together? And how do we change structures and systems.

I wanted to make non disabled people see why they need to think about things from a disability lens and why that’s important and why we should care about it.

TR:

While she was being pushed to write and publish law review articles she found her heart just wasn’t in it.

Already a consumer of audio content including books and podcasts,
she recognized the opportunity to explore some of her interests and expertise.

Qudsiya:

The article I was working on was about disability, specifically disability in the US. And its intersection with immigration, which is one of my areas of expertise as a lawyer.

I really care about disability and its intersections with other types of things like race or other types of policy issues like disability, unemployment, disability and health care.

And I am a person who has experience with like policy and research and these sorts of things.

I really care about this area of work. And I love audio content. And it’s a pandemic, and I’m sitting at home and I got nowhere to go and nothing to do. And I was like, You know what, I’m gonna do it. That’s how Down to the Struts was born.

— Music begins a Hip Hop beat opening with hi hats…

TR:

Occasionally, I’m asked about starting a podcast. My advice closely aligns with the steps Qudsiya lays out.

Qudsiya:

I decided I wanted to do an interview style show and bring a mix of sort of people with lived experience, people who are experts in their fields to talk about sort of very broadly speaking, disability design and intersectionality.

I got a team of people together.

I don’t know how to design a website, I don’t know how to audio edit, I got a lot of brains together. And at first it was just for advice. But then a couple of friends of mine, really like wanted to be involved and wanted to work on it. And I was so touched by their desire to be supportive, they just loved the idea of the project.

I had a focus group of a whole bunch of friends that helped me vote on the title.

We launched our first season in October of 2020. And there’s six episodes, and we’ve just launched season two.

TR:

She narrowed her subject, figured out what aspects best fit her skills and interests.
Assembled others for advice and ended up with a team.
She’s also using a seasonal approach which I highly recommend.
It takes away some of the stress in producing regular content.
And of course, she got feedback on her podcast name. Did I mention she has herself a team?

Qudsiya:

I went to Barnard College, which is part of the women’s college that’s part of Columbia University. So I went looking for a student who was interested in audio editing. That’s how I came across Anna Wu, who is a junior at Barnard.

She brought along her friend Adrian Kahn, who does our transcripts.

I have two other friends. Ilana Nevins is our audio editor and my friend Adriana pole who is fabulous social media coordinator and manages all my Twitter and Facebook and Instagram so I don’t have to. (Laughs )

I’m scared of social media!

TR:

Yes, I’ll admit it, I am a bit envious of her team.

A lot of thought and planning went into the creation of Down to the Struts. Ultimately, it’s figuring out what you want. I get the sense that this is how Qudsiya operates.

Qudsiya:
I realized very, very quickly, that I did not want to be a practicing attorney, I think I probably even knew that before law school, but I knew I was interested in immigration, and I knew I was interested in kind of policy.

A lot of the policy people were like, Well, you can’t really fix the system if you don’t understand the experience of people who are going through it.

So I did practice immigration law, representing asylum seekers and survivors of domestic violence.

And then I went to a different organization where I was managing the program that was delivering services to unaccompanied children who were in federal custody, on the border and in other parts of the country.

TR:

She continued doing that work for a different organization while expanding into disaster recovery and other areas.

— Music ends…

Qudsiya:

now most recently, I’m at a big research like policy institution working on civil court reform work. Making this civil court system for like people who experience evictions and debt collection lawsuits and have to deal with child support cases and things like that to making the system more accessible especially for people who don’t have lawyers, and I bring a lot of my disability kind of focus in there too, because, especially with all the technology and courts, like a big concern is like making sure everything’s accessible.

I feel like, it all kind of bleeds together.

TR in Conversation with Qudsiya:

What do you want people to sort of take away from your podcast?

Qudsiya:

For disabled people, I want them to leave the podcast feeling like their issues are being addressed, that I’m exposing and uncovering the barriers they face and providing positive solutions and proactive solutions to how we can break down those barriers and fix those problems. And for

For the non disabled people I want their eyes to be opened to how the systems and structures that we live inside, whether that’s the immigration system, whether that’s the education system, whether that’s health care, how, they affect disabled people, and how ableism plays a role in that. So that they can walk away and know, there’s solutions to solve them. And I want that information to get out to the people who are the decision makers and the stakeholders in the system so that they can start to make change.

TR:
Think about the importance of all the transitional moments Qudsiya experienced.
From her battle with the white cane to experiencing discrimination on the job
which led to her meeting people who would come to positively influence her life.
Combine these experiences with her own positive attitude and drive and consider her advice for those new to vision loss.

Qudsiya:

Everyone has their own journey and their own experience and their own way of going through those stages of grief and getting to the other side, or whatever the other side looks like, and that’s okay. And you have to be kind to yourself, but know that there’s a community waiting for you. And there’s a lot of possibility and that you are a whole person. And your blindness is a part of that. And it is a really beautiful part of that. That’s something that you should honor about yourself.

— Music begins, a bright inspiring Hip Hop beat

TR in Conversation with Qudsiya:

Qudsiya, you know that you are now an official, and I want to say it twice, an official member of the Reid, My MindRadio family now that you’ve been on the podcast, you know that right?

Qudsiya:

Oh, that’s awesome. Thank you. Thank you for welcoming me into the family.

(TR & Qudsiya laugh…)

TR:

To get in contact with Qudsiya and or where to find the podcast;

Qudsiya:

You can email us at down to the struts@gmail.com. You can find our website which is www got down to the struts.com. We’re also on Facebook, Twitter and Instagram at down to the struts. And you can subscribe rate review the podcast on Apple podcast, Spotify, Stitcher, or wherever you love to listen, so definitely check it out.

TR in Conversation with Qudsiya: 1:00:19
Spoken like a true podcaster.

(TR & Qudsiya Laugh)

TR:

I really liked the way Qudsiya identifies and appreciates the different moments throughout her journey for the value they helped bring to her life.

Once again shout out to Qudsiya, I really enjoyed our conversation.

If you too enjoyed it well you can always feel free to let me know that or any other comments you may have by emailing me at ReidMyMindRadio@gmail.com.
Tell others about the podcast so they can listen for themselves. All I want to do here is to reach as many people experiencing vision loss as early as possible.

You know we have transcripts and more over at ReidMyMind.com right?

And I know you know, that I know you know, it’s R to the E I D
(“D, and that’s me in the place to be! Slick Rick)
)
Like my last name.

Audio: Reid My Mind Outro

Peace!

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