PRESIDENT RICCOBONO: It is a great preview for our convention. I don't know if Homer's going to make it or not but if he is, I'm sure Pam will give him a run for his money at the convention next year. So now that we're all ready to go for this final and outstanding panel for this year's convention leading us into the banquet. This panel is stronger through a diverse, organized blind movement. And intersection of characteristics and the common bond of raising expectations. Colin Wong is co chair of our committee. He has recently stepped into the role. He's a member from Arizona. He's demonstrated his ability to lead but also to teach and I'm really pleased to have him here to introduce and steer our panel. Colin, the floor is yours. Welcome!
we are family
I've got all my sisters with me
we are family
get up, everybody, sing
COLIN WONG: Thank you so much President Riccobono for the introduction. We are family, indeed. In 1963, Dr. Kenneth Jernigan asked a pivotal question. Is blindness a handicap or a characteristic? He went on to answer this by saying no one is likely to disagree if I say that blindness is a characteristic. Many more will disagree if I say that blindness is only a characteristic. It is nothing more or less than that. Now we've got to ask the question why is diversity important within our membership?
We've already answered that question nearly 60 years ago because blindness is just a characteristic. As people, we are so much more than just one characteristic. Society often fails to recognize blind people for more than the blindness that they have. As members of the National Federation of the Blind, we need to start the journey. The National Federation of the Blind needs to set the example to identify blind individuals with their full identities. It is important to recognize and celebrate the diversity that is within our organization and recognize the impact that that diversity has to contribute to our membership. We have a lot of diverse leaders and we need to give them the opportunity to contribute to the impactful movement that our federation has. It is my pleasure to introduce a panel of diverse leaders who are here to share their stories about why diversity and their identities are important, especially in terms of how it contributes to their blindness journey. Our first panelist today is Tasnim Alshuli, the current chair of the blind Muslims group within the National Federation of the Blind. She is a past national and state scholarship winner. And at this time, she is a Ph.D. student at the University of Arizona studying math education. Tasnim, the floor is yours.
TASNIM ALSHULI: Hello, everyone. In the name of God, the most gracious, the most merciful. God's peace, mercy and blessings be upon you all. Thank you for the invitation to speak on the diversity panel. I'm honored to be given this wonderful opportunity. My name is Tasnim Alshuli. I'm a blind Arab Muslim woman. I'm the state treasurer of the NFB of Arizona student division. An active member of the Tucson chapter.
Ever since I joined NFB back in 2016, I always had the feeling of something is missing. Although the people I have met throughout the years have welcomed me with open arms and hearts. Whether I was part of the NFB of North Carolina, Charlotte chapter, or NFB of Arizona, I always felt I was surrounded with family. But there was always the feeling of something missing.
And this piece that is missing is now being brought to attention and being addressed. Me and along with others identity, beliefs and practices are started to be recognized and included. Within the federation. As a blind Muslim along with other blind Muslims in the federation, we had to struggle between our Islamic practices and involvement in the federation.
For example, lack of accommodations and another segregation factor that we faced is the invocations or prayers that are usually offered except for the first time during this convention where we are, as Muslims, we were asked to open Thursday's general session with an Islamic prayer which was a big step toward inclusion and we appreciate that.
Another challenging struggle is to have to choose between NFB related commitments over observances of major holidays. This was the case when I was a state scholarship recipient and the state convention that year fell on the day of sacrifice. This is when Muslims commemorate the story of prophet Abraham, peace be upon him. This holy day concludes a series of holy days observed by Muslims and concludes the period of the pilgrimage to the holy city of Mecca and it is right after the day of standing.
Muslims around the world observe these holy days by praying and asking for God's forgiveness and skipping the significant holy days was necessary at the time as it is mandatory that a finalist cannot be excused from his or her responsibilities. Even for the observances.
COLIN WONG: We may have lost you, Tasnim or you may have been muted.
PRESIDENT RICCOBONO: Looks like her video froze there, Colin.
You might want to keep it moving.
COLIN WONG: All right.
PRESIDENT RICCOBONO: She got booted. Hopefully we'll get her back.
COLIN WONG: What we're going to do is move on to our next panelist and see if after our next panelist if Tasnim will be able to rejoin us.
Our next panelist that we have is Doula Jarboe. Doula is the president of the deaf/blind division within our Colorado affiliate. She also participates much in the deafblind community within the state of Colorado and she also represents those who have intersecting disabilities within our federation. Doula, the floor is yours.
DOULA JARBOE: Can you hear me?
COLIN WONG: Yes, ma'am.
DOULA JARBOE: Thank you so much, President Riccobono and the federation family for listening to my story and how I live with multiple disabilities. For those of you who do not recognize my name as doula Jarboe, I've been in the federation for most of my life. My legal name is Lauren Hunter.
live the life you want, nobody can stop you reach for the stars oh, wait, that's not how it goes.
So as a deaf/blind person, you don't always hear things properly. I love to sing as you can see. I love music. But I don't always get the lyrics right because I don't hear them properly. Most popular songs you can find the lyrics for thanks to something like Google. But for the live the life you want song, I need to find a copy of the lyrics because I'm guessing since this is a federation song, it is not popular enough to have lyrics listed somewhere. When I pull the song up on YouTube and tried to use the closed caption feature, apparently it doesn't work with JAWS because I didn't have anything to read. So I'm still trying to figure out just from listening I've got the first verse and I think I have the full chorus. Still trying to figure out the second verse.
And one of the challenging things for me as a deaf/blind person is getting people to understand that yes, I might need you to repeat something but most likely I don't need it louder or slower. I just need to hear it again because I didn't process it correctly the first time. I have a rare genetic syndrome called Alstrom syndrome. It causes organ deterioration and failure. It is not something where you get told you have just blindness or blindness and hearing loss. You continually have organs trying to deteriorate and fail. And that is very challenging to live with. My parents were not aware that they were going to have a blind child let alone a child with multiple disabilities and we did not figure out my diagnosis of Alstrom syndrome until I was almost an adult. So we didn't know what to expect.
One of the most challenging things is hyperphagia. I would have a meal and I wouldn't stay full. As a child, you don't have that lived experience and you don't understand what other people are experiencing. You just pay attention to what your body wants. I ended up getting to we didn't know it was a biological issue until I was an adult.
As an adult, I continued to have organ deterioration. My most two recent organ deteriorations that have been challenging are kidney disease. When your kidneys wear down, they don't filter out things properly so you have to be a lot more careful about what you put into your body. You have to be careful about how you eat, how you drink. And so for those of you who have been drinking copious amounts of coffee this week, not an option for me because coffee has a lot of potassium and potassium is hard on the kidneys. Lots of things are hard on the kidneys when they don't work properly.
The other one that's been very challenging and they don't have an explanation is that my lungs are not properly using oxygen. So I have to be on supplemental oxygen all the time. It's harder to walk quickly. It is harder to exercise and try to stay in shape. And I'm so happy that we're working on medical devices because my oxygen concentrators are not accessible. I have stationary oxygen concentrator that plugs into the wall. You have a dial to adjust the setting and you can spin it and spin it and spin it and the piece that shows what level it is at is behind inside the machine. So as a blind person, there's no way for me to know where the setting is.
And with the concentrators I have, I can set the level of oxygen that I have but I cannot read the LCD screen. So for instance yesterday, it overheated. And all I got was it's beeping at me. I knew something was wrong but then I had to get a sighted person to look at the screen and tell me what the issue was. I have a guide dog. She's getting old so I'm going through the process of paying attention to when she needs to retire which is one of the hard parts of having a service dog. I also have a PTSD dog. He's self trained and I have PTSD. One from an experienced emotional abuse from prior relationships, trying to find somebody who would help me with managing my medical issues and be a caregiver. And also when you continually hear that your body is breaking down and not working properly, mentally that, is difficult to continue to take in. And still keep a positive attitude.
SPEAKER: Doula, this is Beth. I just wanted to let Colin know that Tasnim is back in. Sorry to interrupt.
DOULA JARBOE: Could you repeat that?
SPEAKER: I wanted to get Colin know that Tasnim is back in the Zoom.
DOULA JARBOE: Okay. Great. Where was I? So yes, I have a PTSD dog. He's a terrier mix and he's been trained to detect and know when I'm triggering by how I'm emotionally reacting and he will hop up and help me calm down instead of me being stuck emotionally.
One of the things that's different about me, I guess unique to me and possibly other people with multiple disabilities is that I am not employed. I choose not to be employed because of the fact that I'm dealing so much with managing medical issues, going to see doctors, dealing with medical tests and I feel like I would not be reliable. My training is in mediation. That was the career I wanted to have. I felt it would be unfair to clients for them to say okay, we're ready to go through this process and have me come back and say I'm sorry but I can't do this today because I'm too sick. I'm in too much pain. I don't have enough energy. It wouldn't be fair.
I manage my medical conditions and that's my job. It is a little different because most people, it is common in conversation to say what do you do? I have a hard time coming back with something of an answer just because of my particular conditions, it's not a possibility.I'm sure there's a lot more that I could share but I would like to end there and thank you so much for your time.
COLIN WONG: Thank you so much, Doula. Thank you for sharing with us your personal stories and all of the things that you experience. It is an honor to have you as a leader within our organization. Since we do have Tasnim who was able to connect back on, I want to reintroduce Tasnim.
The floor is yours.
TASNIM ALSHULI: Hello, everyone. I apologize. I had internet connection issues.
SPEAKER: Tasnim, could you just turn your audio video off? Maybe that will free up some bandwidth and you will be able to hold on to your internet connection and we'll be able to at least hear you.
She is still locked up. Colin, back to you.
COLIN WONG: Thank you so much, Beth. All right. The next panelist that we have is Sanho Steele Louchart. Sanho is a strong leader within our federation. He's the chair of the LGBT group within the National Federation of the Blind. He also is a board member of the Oklahoma state affiliate. The floor is yours.
SANHO STEELE LOUCHART: Thank you so much, Colin. Happy convention as always. I am so grateful to have the opportunity to address more than 1,000 people today who are people that understand blindness and understand my blindness or at least the way that it manifests in my life. That is a gift that of course we don't get every day in our lives.
One of my identities though that often goes unaddressed in the federation and elsewhere is the identity of, in my case, being gay but more broadly, people who are LGBT. And when I had the opportunity to speak on today's panel, I thought well, I could tell my story, sure. I could also begin to chip away and tell the stories of people who are like me. Stories that aren't often told.
I realized that I was gay when I was 12 years old and went blind about three weeks later. There was no notice that I would go blind. We didn't know that that was a possibility. It was a thing that suddenly happened and then I had two identities to grapple with. And all of that privilege or much of that privilege that I've been raised with, went away. It disappeared and dissolved and I suddenly had to learn to exist in the world as a blind, gay 12 year old. And it was interesting for me that as a blind person, people automatically assumed I became unaware. We all know that struggle. That's the struggle of people assume what you can and cannot do, mostly what you cannot do.
Then there was this new bridge to cross of I was also gay, right? So my male friends no longer particularly wanted to be around me. They had lots of questions and they didn't have the language to voice those questions and have satisfying answers. So my social circle changed drastically for multiple reasons. And meanwhile, I'm learning blindness skills and learning who I am. It was an interesting time. Now here I am at 28. Some 16 years later, nearly. And I've learned quite a bit about myself but it's also now time and opportunity for me to share that knowledge with other people.
So when I was first orbiting the NFB, I held it at arm's length. I had heard, among other things, that it was not a place where people like me were particularly welcome and I did not know if that was true, to be clear. I had never faced adversity within the NFB so of course I wasn't facing adversity within the NFB. Then I heard of the NFB LGBT group. I thought that is something I want to see get off the ground. I went to a few meetings. There were people who understood my blindness as all of you do and people who understood I was part of the LGBT community and then it became more of a characteristic. Not something that particularly needed to be talked about.
And in that group, what I found were people who were multiply disabled, different religions, different backgrounds, different everything. They had blindness in common and also LGBTness in common or they were allies. And either way, they were people who brought their diversity to the table and they celebrated their differences. I thought wow, what a robust situation to find one self in, not just celebrating blindness but celebrating all of who we are on a holistic level. It was incredible! And to say that even within the LGBT group here in the NFB, we have such incredible diversity and shifting perspectives, there's no way to put it into words. Really, it is a whole lot of different people coming together to celebrate one another. And then I began thinking well why might the NFB at large not have been having this conversation for decades preceding and the nearest I could figure is that we were so focused on blindness and celebrating our blindness that we weren't having those conversations about these other identities.
And I became curious. What's the real world impact of that? There were people like me who didn't join the NFB because I didn't know if I was welcome. But what about the people who were here? And I started asking around. What I learned is many people felt like they were in the shadows in this organization that loved a huge part of who they are, they felt like they weren't welcome to have those conversations, to bring that identity to forefront. They thought that maybe, as I experienced when I was 12 years old, what would be a bridge too far? Sure these people might accept me for being blind but do they accept the other things about me? If it's not, I don't want to find out.
Well, the NFB LGBT group here has really been stripping away those fierce because now we have the opportunity to have both camaraderie and openness and transparency where we say to non LGBT members, we can say we're here. We exist.
We're proud of ourselves. And we're so proud that you're proud of us, too.
Sometimes difficult questions do come up. Certainly. Sometimes we face adversity even within the federation. But we're working on it. We're having the courageous conversations and we're doing our best to educate and spread awareness.
Many non LGBT members might look at us and say why do you need a group? Why do you need a month for pride? Straight people aren't getting a pride month. And we say right because every day of the calendar is straight pride because it's become normalized. It is a part of your experience. Whereas we need these groups and we need a little bit of recognition of our existence just so that way, everyone knows who we are and that we're there. If you think you don't know an LGBT person, I assure you, you very much do. It is estimated that 10% to 15% of the American population is LGBT of some flavor. You might not know it but definitely we're out there and we're leading happy, successful, productive lives right around you. And that's a fine thing. Not everything has to be about that one identify hit that we have.
But a bunch of our lives are about that identity. A little bit, anyway.
I wanted to let everyone know when we meet the NFB LGBT group has an email list has and you can email [email protected]. You can click the link and be added to our list to get our updates. Alternatively, we do also have a Facebook page that you can find at National Federation of the Blind LGBT group. You request admission and then we go ahead and admit you. And then through both the LGBT page and the email list, we have weekly meetings on Zoom. Though you're also welcome to call in.
There is always a number included in the information. Whether you're using the Zoom app or a telephone line, every Thursday night at 9:00 eastern, 8:00 central, 7:00 mountain, 6:00 Pacific and it goes on for several hours. It is social and informal, just a way for us to stay connected and do good work. Thank you so much, everyone. My name is Sanho pronouns he, him, his. Thank you for being here and for being open.
COLIN WONG: Thank you so much, Sanho. I appreciate the guidance and the leadership and for sharing with the federation on what we can do to take the LGBT community into consideration and what all of you guys are doing.
I do want to provide one last opportunity for Tasnim. I'm not sure if she made it back on. The federation does respect the voices of those who have various religions including our blind Muslims. Tasnim, were you able to get reconnected?
TASNIM ALSHULI: Yes, I am. I apologize, everyone.
This is the first time this has happened. I turned off my camera. I'm using it on the phone. Thanks for your patience. I'll start from the part that I left off which is I'm not only I'm a blind Muslim. I'm also an Arab American.
Ever since I joined the NFB in 2016, I had a feeling something was missing. Whether I was part of the NFB of North Carolina or Arizona, I felt I'm surrounded by family but there's always the feeling of something's missing and this piece that's missing is now being addressed. Other beliefs and practices are starting to be included in spaces within the federation. As a blind Muslim along with other blind Muslims in the federation, we had to juggle between our religious Islamic practices and our involvement in the federation. For example, lack of accommodations and another segregation factor we face is the prayers that are usually offered. For the first time during this convention where we as Muslims were asked to open Thursday's general session with an Islamic prayer which was a big step toward inclusion and we appreciate that.
Another challenging struggle is to have to choose between NFB related commitments over observances of major holidays. This was the case when I was a state scholarship recipient. The convention that year fell on the day of sacrifice. This is when Muslims commemorate the story of Prophet Abraham. This holy day concludes a series of holy days, especially the period of pilgrimage.
Muslims ask God's forgiveness and skipping the significant holy days was necessary as it is mandatory that the finalist cannot be excused from his or her responsibilities. Even for religious observances. Which will lead to disqualification. As everyone knows, it is a great honor to receive such recognition. It was also a means for me to connect with my new community in having to move from one state to another.
To re establish myself within this lovely community. Missing holiday observances is a time of struggle and solitude for people of faith. Islamic holidays are very social and collaborative. You're usually at the mosque and with your family and loved ones, praying and remembering God, sharing love and joy.
In most cases, Islamic religious observances are hardly recognized or even taken into consideration. In the federation and generally in the United States. However the federation is changing that. The federation is directly working with the NFB Muslims group to do what needs to be done to have Islamic practices be recognized and Muslims included within the federation. The federation is Head Starting this initiative. Hopefully the federation will serve as a model to the United States when it comes to access inclusion and equity for Muslims and other underrepresented groups. I want to be one of the voices that encourages my beloved NFB and other communities in America and beyond to become familiar with the true Islam…
...the practices, when planning for events and activities, such as in state and national conventions, as we do with observances from other faiths. Most NFB affiliates and chapters and divisions and groups would not even consider scheduling a convention over Christmas, Easter, Thanksgiving, and other major holidays. Therefore, we should also not do the same for the Muslim holidays or Islamic holidays. The struggle between faith and commitment as well as belonging still continues to appear. I hope we do continue to provide these spaces for voices to be heard. And this missing piece could be found, and we could become healthy and united. Without the support of one another, we cannot continue to build the Federation when we are diverse. We grow when our hands are tightly grasped with one another. If you would like to connect with the NFB Muslims group, you may do so after subscribing to our email listserv at [email protected]. We welcome all. Peace be upon you all. Thank you again.
COLIN WONG: Thank you, Tasnim, for leading that group and teaching us to understand. Our last presenter for tonight's panel will be Priscilla Yeung. Priscilla is a member of the Asian-American Pacific Islander or AAPI group of community. She is a member, longtime member of the Federation, and she is a senior services manager for the Sacramento society of the Blind. The floor is yours, Priscilla.
PRISCILLA YEUNG: Thank you, Colin, for this opportunity.
Good evening, everyone. I'm so grateful to be here. I was born in the U.S. I am Chinese American. Growing up in my Asian culture, I felt isolated and different because of my blindness. When I think about the values that have been instilled in me from my Asian culture, I think about the values of working hard, surviving in the midst of challenges, and valuing the family unit beyond the individual. Most Asian families see disability through the lens of shame, being a burden, and the cause of blindness perhaps being brought on by family sin.
It has taken me many years to come to see that my personal journey of blindness within my Asian culture is a mixed set of experiences. I now recognize the good in my culture as well as the bad that have impacted me. Thinking back to my past, these cultural truths were embedded into who I was, although I did not have the words to express them growing up. One of my earliest memories that stands out to me was my grandma in Hong Kong leaving me at home when all the other cousins were able to go out and have fun. She said that if I went out and my cane touched someone else, they would become blind just like me. I learned at a young age that being blind was shameful and embarrassing. My vision loss was a family secret to be hidden. I had to do everything I could to be normal. We never used the word "blind" in our family, nor knew any stories of successful blind people. My parents loved me and they were well intentioned and did everything they could to help me see again. Their attempts included numerous acupuncture appointments on my eyes and making me drink all that bitter pled Isal soup that I too guzzled down, hoping it would bring a miracle.
I learned through this that my parents would work hard and sacrifice their time and money to help me heal from this condition. If I did not heal from my vision loss, then the only other logical alternative for me was to find a husband who would take care of me. Looking back, they too were by products of their cultural beliefs, and therefore, so was I. I began to also believe that I was not capable of taking care of myself, and that I would forever be a burden to my family for the rest of my life.
Fast forward after I received training and mentorship at the Louisiana Center for the Blind. I met my husband who is also Chinese American and we were married without the blessing of his family. His family had disowned him because they were against his choice of marrying me, a blind woman, who they believed without even meeting me would become a burden to him. After all, they too were caught in the Asian cultural misconceptions of blindness.
These years were trying times for my husband and me. I questioned all that I learned about independence from the NFB. I am grateful for my friends in the NFB who listened to my heart. I was on the brink of being dragged back into my cultural beliefs of shame and uselessness. I went to counseling so I could do the internal work of acknowledging the cultural pain, to forgive and to let go in order to move forward so that I could be proud of all that made me who I am. Only then could I truly begin to approach my relationship with my husband's family with openness and understanding of their own cultural experiences that led to their misconceptions about blindness.
Thankfully as the years passed, my relationship with my mother-in-law mended, and we continue to move towards reconciliation. But this didn't happen in a western way, like with an apology full of words, open conversation and hugs, but more so with small gestures that show me that she in her own way accepts me. I realized that I needed to listen to her and to actively look for opportunities to make real connections in any way possible to take small steps forward. My husband and I wanted to show my mother-in-law that we valued family. In the early years we would attend uncomfortable family dinners where nobody would speak to me. And I felt invisible. This was painful and took grace and humility. But I realize that there was value in just being there, because it meant I was present.
Finally, when I had my son, something slowly shifted and my mother-in-law responded by caring for my son. We allowed her to give him his Chinese name as a gesture to further connection. Today we do not talk about the painful start of our relationship, but she shows me that her heart is open by the special chicken soup she makes me, the lucky red envelope money she gives my children, and she always welcomes us into her home.
Similarly, when we visit, I listen to her attentively, as she shares about her life growing up as an immigrant, and all the pain and hard work it took her to support her family. She as a mother was only motivated by wanting what was best in her own cultural view for her son.I understand now how the Asian culture shaped her beliefs about disability. I am grateful for her willingness to work through these negative cultural beliefs in her own way and in her own time.The journey to overcoming the stigmas of blindness is one that we as Asians will face because we live within our Asian culture, and all its values shape who we are.
We today who identify as blind AAPI members are fortunate because we have learned of another way to live our best life. The positive philosophy about blindness can transform our beliefs from that of shame to one of pride. From being a passive minority to now playing an active role in changing our own destiny. From feeling invisible to now having a voice.
We each have a story to share about who we are and what makes our blindness journey unique. Together in this pivotal moment of time, we now must find the courage to share honestly, openly, and to seek to bring about understanding for all.
COLIN WONG: Thank you, Priscilla. Tonight we've heard from someone who identifies as a Muslim, someone with an intersecting disability who is deafblind, we've also heard from somebody who identifies as gay and someone who identifies as Chinese. By no means is that the end of diversity within our organization.
I have one last parting message for everybody. The leaders today have shared so many amazing stories. Stories and vulnerability go hand in hand. The vulnerability of the storyteller needs to be open and share their stories out, but it's also vulnerable for the listener who hears these stories to let these stories sink in. The stories that change us as people are those that inspire us by teaching us strength in how to overcome adversity. The world treats the blind in a way where we have plenty of opportunity to face adversity on a daily basis. The National Federation of the Blind cannot be a place where our members face adversity of discrimination. It needs to be a place where members, regardless of what background they come in, have a place of belonging. It's time that our diversity is celebrated, and it's time for diversity to be recognized for the importance that it has in our movement. It's time that diversity is interwoven into everything that we do. And it starts with us, as members, as chapters, as affiliates, and as a national organization. All of our stories are beautiful, and it's time that we talk to each one, to each other, to say "I hear you. I believe you. And I want to understand you." It's time to build a more diverse equitable and inclusive Federation.
Thank you, Mr. President.
MARK RICCOBONO: Thank you very much, Colin, and to our panelists. I think you said it much, much better than I could.
The challenge for us is not our diversity. The challenge for us is finding the power in our diversity and having our common bond as blind people be the reason that we find the power in our diversity.