Editor’s Note: This interview has been edited and condensed for clarity.
SHY: Can you talk about your experience of being diagnosed with LHON and how you adapted to losing your vision at age 16?
Joseph Sehwani: It was on September 11, 2011. That’s when I first noticed a blurred spot in my eye. It was in the middle of my Spanish class. I dismissed myself and went to the bathroom, called my parents, and went to the doctor. It was a really scary and confusing situation, but we knew what it was. We had a feeling that it was LHON; it runs in my family. My grandma has it and my uncle had it (it cleared up for him which is great). At the time, I was questioning the fairness of the situation. It was very difficult to accept, especially as a 16-year-old, what was going on. Things that I’d learned over the past 16 years or so had to be retaught. My way of life completely changed because things I’d expected or goals I’d set within that time frame now had to be reprioritized, rethought and replanned. That was a really shocking experience for me, because it felt like the only person in the end that was being impacted was me. I was the one who was going to have to deal with it, and I’m still the one who has to deal with it.
I remember going to a lot of help groups which, in Florida, were called the Lighthouse. A lot of the kids I was interacting with were very depressed about it. I wasn’t depressed, but I was very rebellious. And that’s the best way to explain how I felt.
However, one of the things I’ve always held onto from past experiences is that it can always be worse. That’s the mentality that levelheaded me and brought me back. Interacting with a lot of these people and seeing that they weren’t taking it so well upset me too – not because they were acting like that, but because I could see myself falling into that situation as well. And I didn’t want to be in that situation. So I chose to be my own motivation – be self-motivated, self-determined, self-inspired – and that propelled me to where I am today.
But back then, I was facing a lot of problems in school – not with students but with primarily the school programs. They were bullying me out of the programs because they didn’t have any policies for what I was experiencing. That’s what I was saying about the gray area: it’s either you’re blind or you’re not. But I’m visually impaired to a sense where I can’t operate as a normal student. One of the things that was upsetting was that they flat-out gave up on me. I remember talking to the principal of the program, and he was very discouraging towards college because he said it’s not going to work. But that’s what drove me in the right direction because I’m the type of person who has this “watch me” mentality. If someone talks to me in that way, I go out to prove them wrong. And that’s exactly what I did.
Now I’m at Seton Hall University, a great school, and I’m busy with my organization. I make sure to inform a lot of people I went to high school with what is going on. I exceeded expectations. I was underestimated, and I was kicked out of programs because they didn’t know how to deal with me. Essentially, they abandoned me. But the truth was that I didn’t know how to deal with it either at the time. So I had to force myself to mature very fast because as a 16-year-old, the only independence I knew at the time was being able to drive, but there was so much more to that. Once that was gone, I had to redefine my definition of independence. I had to redefine the definition of motivation, determination and essentially my life.
So I guess where I’m going with this is that in the end, LHON did close a lot of doors for me, but I would view it as more of a gift now. It has shaped the whole organization, which has been going strong. Although it affected a small portion of my life, I feel like it’s redefined everything for me. It’s difficult to think of what would have happened or where I would be today if it did not affect my life. I think I would’ve been generally the same, but my goals, my motivations and my journey would’ve been completely different. I wouldn’t have had such a clear path and vision of what I wanted. So I definitely view it now as less of a challenge and more of a gift, because it was a chance to envision what I truly wanted.
SHY: How did you incorporate your passion for art into the Dreamscape Foundation?
JS: Prior to becoming legally blind, I was very artistically inclined. As I went through my ordeal, I found ways to continue applying my creativity despite my disability, proving anything is possible. I wanted to get Dreamscape at a nonprofit status and registered with the state, which eventually lead to the tax-exemption status. But I needed funding to get it all together. So I created 10 pieces of art based off of pop culture and mixed media for donors to help raise funds for the foundation. The campaign was called Dream 10 Program, which was Dreamscape’s first step to bringing optimism into the lives of the disabled. It began in late summer of 2013 and lasted until early fall of 2013.
Then, I wanted to keep that part of the organization and use unique and creative methods to raise money, because I thought it was a different and fun approach to philanthropy. And when it comes to Dreamscape Foundation, that’s what I believe will eventually set my organization apart from others: the different methods of raising funds and the community interaction and involvement. I keep a very open mind when it comes to the community and my mission. Obviously, I want to focus on helping people with rare disabilities and diseases find independence, but I have never completely denied individuals who asked for help in a different category of need. I’ve always figured out ways to accommodate them as well.
SHY: What were some challenges of starting a nonprofit while still in college?
JS: I started fundraising out of high school to get it together. Then, in the beginning of my freshman year of college, on December 25, 2013, was when it was finally recognized as a nonprofit. The next step was the 501(c)(3). But the biggest challenge was obviously getting all the paperwork together and formulating that, because that was tedious for me. But as far as paperwork was concerned, I didn’t do that alone. My dad and a lot of my family members helped push it and helped me get the contacts I needed to get it together.
And my main focus during that paperwork phase was getting together events, pushing advocacy for disabilities and building an audience to reach out to. So that was the challenge in itself, but it was necessary because I knew as soon as the paperwork went through, I wanted to be ready to start right away. Building an audience was my main focus, and as that was happening, my family was helping me with the paperwork. And once it was filed, we had to wait; it was a six- to eight-month time frame to get it all together.
SHY: How do you balance being a student, philanthropy chairman for your fraternity and running a nonprofit organization?
JS: The joke amongst me and my friends is that I don’t sleep and that is very accurate. My friends and I always say that the next sponsorship I should get is 5 Hour Energy because when I’m up late at night, that’s what I always take. But time management is key. There’s no time for procrastination. When you’re working and you’re determined and driven to get things done, you’ll get them done and forget everything else along the way. There are some nights I forget to eat dinner or lunch, and I work past it. It’s because those goals ultimately outweigh everything else.
It’s very easy for me to tell you I want to be the biggest nonprofit organization in the United States one day. But I feel like a lot of people today will have problems telling you how to get there, and one of the things I focus on is building up to that point – focusing on the small goals to get to the big picture.
As far as time management is concerned, there’s really no time to waste. One of the things I learned is sometimes you have to sacrifice things you want to do. So sometimes I have to sacrifice social time with friends, sleep and other activities I want to do. But I know in the end, it will be worth it. And I enjoy it.
Some people look at me sometimes, I’ll be up at 4:00 to 5:00AM working, and they’ll question, “What are you doing?” But at the end of the day, it’s what I do, and my work ethic doesn’t need to be explained. Other people don’t have to understand it.
I hope when someone is able to find something they’re truly passionate about, they will be able to go through it and feel like nothing else matters anymore. For me, adopting the philanthropic aspect was my goal, so I never do things anymore that don’t line up with that main goal. That’s why although adding Phi Kappa Phi to the list of my responsibilities was another time-consuming choice, I joined because it lined up with Dreamscape Foundation.
SHY: What is your real-life super power?
JS: I would say being able to inspire because that’s the whole mission behind Dreamscape Foundation and the whole drive behind my philanthropic mission. My goal is to inspire the community at large to come out and advocate for people with rare disabilities and diseases. That is extremely important to me, and I want to be able to inspire people to feel the same way.
I would say that inspiration was also the determining factor of how I took the disability myself. I have that “go big or go home” mentality, so instead of just volunteering, I wanted to leave a mark behind and really be known and inspire everybody to do the same thing. Because what I would really want someone to take away from my story and from Dreamscape as a whole is that everything is possible. No matter what your goal or dream is, I truly believe that everyone has the power to achieve it. I wish to inspire them to go out there and chase it down because “someday” isn’t on the calendar. You have to have a plan and a goal for it because there is no “someday.” That is what I learned with my disability and my ordeal. Gaining the inspiration I needed to move forward was what opened a lot of doors for me.
SHY: Do you have any advice for our readers mainly in their 20s and 30s on overcoming disabilities or “roadblocks” in life?
JS: At first I would say, when you encounter any roadblock or any challenge, it’s going to seem impossible. But one of the really important things that helped me to adapt to the disability was setting goals for myself. There were a lot of goals I wanted to be able to accomplish with my disability. As I was able to cross those off, it really helped me overcome it because I felt like nothing changed. For example, I still wanted to be able to hang out with my friends, work out, go to school, draw and paint. Those were all things that were important to me at the time and setting those goals and showing myself and others I can still do them was as if nothing changed. If you talk to people who really know me, sometimes they’ll tell you they forget I have a physical impairment, simply because I don’t let it stop me from doing things I want to do. I showed myself that I was able to accomplish anything as long as I put my mind to it. So once that was clear to me, I was able to overcome it, and I was able to adapt my situation to common goals like forming a nonprofit organization, doing well in school, and being an active member of society. I was still able to do all of these things and have a social life because I set goals for myself. So being self-driven and being self-determined is definitely the key to overcoming anything. That’s what I’ve learned.Read More Next »