Legally Blonde & Blind Marissa Nissley

I have never wanted a “cure” for my albinism and corresponding visual impairment, but only recently found the words to explain why. Research regarding treatments for and the genetic origins of disabilities raises complex ethical questions. Does studying albinism in a laboratory genuinely improve people’s lives, or does it merely satisfy the curiosity of medical professionals? In “I’m Not Broken,” I argue that albinism should be viewed as part of one’s identity and a source of community rather than an undesirable mutation. I consider the emotional, social, and political impacts of seeking to reverse or cure blindness. I then argue how redirecting these funds towards developing assistive technology, advocating for legislative changes, and providing necessities (sunscreen, UV protective gear, etc.) to people with albinism would have a stronger impact. Keep in mind that this is a deeply personal subject. My goal is to share my perspective and lived experience—not speak on behalf of the entire albinism community. 

“I think it is very important to center lived experience and the voices of people with albinism when discussing research about our condition. Because when it’s only parents and medical professionals making these decisions, they miss part of the picture.”

Connect with Legally Blonde & Blind!

Website  - https://www.legallyblondeblind.com/ 

Instagram - https://www.instagram.com/legallybb_/?hl=en 

Facebook - https://www.facebook.com/legallybb/ 

LinkedIn - https://www.linkedin.com/company/legally-blonde-blind/

Key Points:

0:00 - Intro

2:30 - Why is genetic research such a complex issue in the disability community?

5:30 - NOAH and Albinism Research 

7:20 - Personal and Emotional Experiences with Albinism Research 

13:30 - Does focusing on albinism at the molecular level meaningfully improve people’s lives?

14:25 - The “Vision” Component - Does sight equal quality of life?

19:10 - The “Appearance” Component and Beauty of Biodiversity  

21:05 - Final Thoughts 

Resources: 


“Should ‘Broken’ Genes be Fixed? My Daughter Changed the way I think about that Question” - https://www.statnews.com/2020/02/21/should-broken-genes-be-fixed-my-daughter-changed-the-way-i-think-about-that-questi


“‘Curing Blindness:’ Why we Need a new Perspective on Sight Rehabilitation” - https://theconversation.com/curing-blindness-why-we-need-a-new-perspective-on-sight-rehabilitation-145276 


“Is a ‘Cure’ for Blindness Worth $1 Million?” - https://www.theatlantic.com/science/archive/2017/12/gene-therapy-blindness-luxturna/549059/ 


“Blind YouTube Star Molly Burke Doesn’t Want a Cure - SHe Wants a Voice” - https://www.msnbc.com/know-your-value/blind-youtube-star-molly-burke-doesn-t-want-cure-she-n1040376


“Stop Trying to ‘Fix’ My Disability” - https://youtu.be/ZPeH43XI4vA 


“Do I Want to be Cured and get my Sight  back?” - https://youtu.be/IpyHoO2Q-Jk 


“NOAH Research Program” - https://www.albinism.org/research/ 


“Nitisinone Increases Melanin in People with Albinism” - https://www.nih.gov/news-events/news-releases/nitisinone-increases-melanin-people-albinism 



Transcript - https://www.legallyblondeblind.com/post/27-i-m-not-broken-why-albinism-advocacy-is-more-valuable-than-genetic-research 

There is more to “guide dogging” than meets the eye. Contrary to popular belief, guide dogs are not perfect robots or GPS systems who can single-handedly take handlers to class or tell them when to cross the street. Working with assistance animals is much like learning a language, an entirely new way of communicating. In the 26th episode of Legally Blonde & Blind, I share my experiences applying for and training with my first guide dog. Tune in to learn more about my challenges, success, and takeaways from my first month as a guide dog handler!

“I got a guide dog because I wanted to prioritize my happiness and safety over arbitrary notions of necessity or independence.”

Connect with Legally Blonde & Blind!

Website - https://www.legallyblondeblind.com/
Instagram - https://www.instagram.com/legallybb_/?hl=en
Facebook - https://www.facebook.com/legallybb/
LinkedIn - https://www.linkedin.com/company/legally-blonde-blind/

Key Points:

0:00 - Introduction!

1:50 - All About Smalls!

6:00 - Why did I record this episode a month after being matched?

7:10 - Disclaimers

8:45 - Why did I apply for a guide dog?

9:00 - Reframing my Attitudes towards Disability and Independence

13:00 - Investing in Myself

14:30 - Choosing Joy

16:00 - What is the application process like?

18:20 - What I learned from my first month as a guide dog handler

18:40 - Bonding doesn’t happen instantly

19:30 - Having a guide dog is a CHOICE

21:15 - Feedback does not equal Failure

22:45 - Dogs learn from EVERYTHING

24:20 - Take things one step at a time

25:00 - Guide dog training is VERY emotional

27:00 - Confidence is key

Resources:
“Canes vs. Guide Dogs | Pros and Cons” - https://www.youtube.com/watch?v=xyq-JgvpvHQ&list=PLwa2HVLMFj5Vmgh7QkaCvWTHS6ZJlRVfv&index=2&t=680s
“5 Things I Wish I Knew before Getting my First Guide Dog” - https://www.youtube.com/watch?v=0sZI7UTQ40g&list=PLwa2HVLMFj5Vmgh7QkaCvWTHS6ZJlRVfv&index=7
“Zenith in Action | Watching my Guide Dog Work” - https://www.youtube.com/watch?v=IRdRQ2KTkLI&list=PLwa2HVLMFj5Vmgh7QkaCvWTHS6ZJlRVfv&index=9
“How I Handle Access Issues” - https://www.youtube.com/watch?v=AEgUf7BPNJc&list=PLwa2HVLMFj5Vmgh7QkaCvWTHS6ZJlRVfv&index=21
“Try Guys Train Guide Dogs for a Day” - https://www.youtube.com/watch?v=CvAmiYQgytA
“10 Worst Things about Having a Guide Dog” - https://www.youtube.com/watch?v=XVPTwDjT9Ek
“I Almost Left Training without My Guide Dog” - https://www.youtube.com/watch?v=lK1pzIvGUWA&t=244s
“Guide Dog vs. Cane - Pros and Cons!” - https://www.youtube.com/watch?v=Yd2O9qmq8qc&t=918s
“Guide Dog User Answers Most Googled Questions about Guide Dogs” - https://www.youtube.com/watch?v=5mZ8Hk_j9D4&t=531s
“All About Guide Dog Retirement” - https://www.youtube.com/watch?v=BEkLu3UxaH4
“College Advice || Service Dog Addition” - https://youtu.be/gBN014EPez4
“The Challenges of Having a Service Dog in College” - https://youtu.be/QNnQbLiWPLQ
“White Canes vs. Guide Dogs. Which is Better? 21 Pros and Cons” - https://youtu.be/IURFgbt-AGc

Less than 30% of working-age blind adults in the United States are employed full-time. Approximately only 16% of them have a Bachelor’s degree or higher. Tired of being the only blind person in the room, Kathryn Webster joins Marissa to discuss how her organization Together Achieving Dreams will increase employment opportunities for the low vision community. She specifically focuses on management consulting, big law, finance, and other fields where blind people are especially underrepresented. Tune in for advice on networking, interviewing, and breaking into Corporate America!

Kathryn Webster is a 2023 MBA candidate at Harvard Business School. Upon graduation, she will be joining KKR, a global investment firm, in New York. She graduated with high honors from Wake Forest University with a Bachelor of Science in Statistics and Computer Science. Kathryn is a leader in the National Federation for the Blind and previously served as President of the National Association of Blind Students. She currently serves on the board of the Lighthouse of San Francisco, BLIND, Inc., the Jacobus tenBroek Memorial Fund, and Business Opportunities for the Blind. She approaches each day with the motivation to break the stigma and prove that blind people can achieve anything they want in the world.

“I want us to break into Corporate America. The 75% unemployment rate statistic hasn’t changed for decades.”

Connect with Legally Blonde & Blind!

Website - https://www.legallyblondeblind.com/
Instagram - https://www.instagram.com/legallybb_/?hl=en
Facebook - https://www.facebook.com/legallybb/
LinkedIn - https://www.linkedin.com/company/legally-blonde-blind/

Connect with Kathryn Webster and TAD!

Website - https://tadfoundation.org/
Instagram - https://instagram.com/togetherachievingdreams?igshid=Zjc2ZTc4Nzk=
Facebook - https://www.facebook.com/people/Together-Achieving-Dreams-Foundation-Inc/100086574137762/
LinkedIn - https://www.linkedin.com/in/kathryncornellwebster

Key Points:

0:00 - Introduction!

2:35 - Could you describe your blindness and what the world looks like to you?

3:51 - What sparked your interest in disability advocacy?

5:54 - What inspired you to create Together Achieving Dreams?

11:02 - What are the unique challenges blind people face in corporate America?

13:10 - What is it like interacting with colleagues who have little to no experience working with blind people?

15:33 - What resources is TAD going to provide for blind students?

18:45 - How can people connect with TAD and learn more?

20:10 - What advice do you have for job hunting, recruiting, and interviewing?

23:30 - Outro

24:20 - Guide Dog blooper :)

Resources:
“How Kathryn Webster Owns Her Own Story, and Her Advice for Other Blind and Low Vision Employees” - https://aira.io/kathrynwebster/
“Is Consulting the Right Career for You?” - https://hbr.org/2020/07/is-consulting-the-right-career-for-you
My Consulting Offer - https://www.myconsultingoffer.org/
Management Consulted - http://managementconsulted.com/case-interview/
Case in Point: Complete Case Interview Preparation - https://www.amazon.com/Case-Point-11-Interview-Preparation/dp/0986370762

Driving is a rite of passage in the United States and many people with albinism find themselves on the cusp of qualifying for a license. In the 24th episode of Legally Blonde & Blind,  Marissa shares how she learned to accept and embrace her status as a nondriver. Tune in to learn about bioptics, low vision driving regulations, and ways to support those without a license. Driving should not be the only way to attain independence and freedom!

“Being a nondriver does not mean you will be any less independent. It does not mean you will be a passenger in your mom’s car for the rest of your life. Thousands of blind people have found their way, and so will you.”

Connect with Legally Blonde & Blind!

Website  - https://www.legallyblondeblind.com/

Instagram - https://www.instagram.com/legallybb_/?hl=en

Facebook - https://www.facebook.com/legallybb/

LinkedIn - https://www.linkedin.com/company/legally-blonde-blind/

Key Points:

2:25 - Low Vision Driving Basics

3:36 - Bioptic Telescopes

5:50 - Safety Considerations

9:52 - Attitudes towards Driving

13:05 - How can we better support nondrivers?

13:09 - Acknowledging the Downsides of Car Dependency

14:57 - Increasing exposure to public transportation

15:52 - Offering rides

17:32 - Take a deep breath!

Resources:


Albinism and Driving Bulletin - https://www.albinism.org/information-bulletin-albinism-and-driving/
“Is Low Vision Driving an Option?” - https://familyconnect.org/browse-by-age/teenagers/transition-to-independence-teenagers/preparing-for-independent-travel/is-low-vision-driving-an-option/
“The Negative Consequences of Car Dependency” - https://www.strongtowns.org/journal/2017/11/2/the-negative-consequences-of-car-dependency
“Driving with Low Vision” - https://www.lowvision-nj.com/driving-with-low-vision/
“Proceed With Caution: Low Vision and Driving” - https://www.reviewofoptometry.com/article/proceed-with-caution-low-vision-and-driving
“Driving and Low Vision - What Optometrists Must Know” - https://eyesoneyecare.com/resources/driving-and-low-vision-what-optometrists-must-know/

Transcript - https://www.legallyblondeblind.com/post/24-two-feet-instead-of-four-wheels

How can we help people with albinism facing violence and discrimination in East Africa as college students halfway across the world? On Episode 23 of Legally Blonde & Blind, Tess Ballis joins Marissa to discuss healthcare, education, and dispelling harmful myths surrounding albinism at a grassroots level. She explains how advocating for human rights has boosted her confidence and encouraged her to embrace albinism as part of her identity. Listeners will learn about concrete actions they can take no matter what their resources are.

Tess Ballis is a junior at Northwestern University studying history and political science. Her parents founded the nonprofit Vision for Tomorrow, which seeks to empower people with low vision through research, advocacy, and awareness campaigns. She was a keynote speaker at the 2018 Skin Cancer Foundation of South Africa Summit and gave a TEDx Talk titled “Albinos Don’t Have Souls: What it means to be human from someone who has been told she is not.”

"I just want people to realize we—as people with albinism—have a genetic condition. It affects our hair, our skin and our eyes, but that is the only difference. We are human beings, the same as anyone else."

Connect with Legally Blonde & Blind!

Website - https://www.legallyblondeblind.com/
Instagram - https://www.instagram.com/legallybb_/?hl=en
Facebook - https://www.facebook.com/legallybb/
LinkedIn - https://www.linkedin.com/company/legally-blonde-blind/

Connect with Tess!

Standing Voice Interview https://news.standingvoice.org/tess-ballis
TEDx Talk - https://youtu.be/qhoGts4PGXM

Key Points:

0:00 - Introduction, Background, and Content Warning

4:20 - What sparked your interest in albinism and human rights advocacy?

6:20 - A crash course on albinism and human rights

10:45 - What is currently being done in the nonprofit space to address these issues?

12:55 - Where are the gaps? What more would you like to see done?

18:45 - What made you want to speak publicly about albinism & human rights?

25:00 - How has advocacy work influenced your personal relationship with albinism?

27:45 - Why do you choose to use the phrase Person with Albinism?

31:45 - How can other people with albinism process these harsh realities and feel empowered rather than discouraged?

36:00 - How can people get involved? What nonprofits and NGOs should people check out?

Resources:

https://news.standingvoice.org/tess-ballis
https://visionfortomorrow.org/
https://www.underthesamesun.com/
https://www.ohchr.org/en/stories/2022/03/attacks-against-people-albinism-are-hate-crimes-un-albinism-expert
https://www.hrw.org/news/2019/07/01/out-shadows-resilience-and-courage-people-albinism-mozambique
https://www.opensocietyfoundations.org/voices/we-are-tired-of-being-ignored
https://www.opensocietyfoundations.org/voices/q-and-a-an-international-movement-for-albinism-rights
https://www.voanews.com/a/africa_women-mothers-children-albinism-suffer-worst-discrimination-report-finds/6185246.html
https://www.thejfa.com/read/on-the-african-continent-discrimination-against-people-with-albinism-is-intensifying
https://minorityrights.org/programmes/library/trends2020/tanzania/

Transcript - https://www.legallyblondeblind.com/post/23-making-our-voices-heard-albinism-and-human-rights-advocacy-feat-tess-ballis

Many parents of children with disabilities or chronic illnesses use social media to share information and connect with others, but when does this go too far? In Episode 22 of Legally Blonde & Blind, Marissa discusses issues surrounding representation and consent when sharing a child’s disability on Instagram, Facebook, YouTube, or other social media platforms. Tune in to learn why “raising awareness” and “inspiring others” is often not as straightforward or impactful as mommy bloggers believe.

“My fear is that when parents take up so much space on social media, they send the message that people need to speak for us, that we can’t share our own stories.”

Connect with Legally Blonde & Blind!

Website  - https://www.legallyblondeblind.com/

Instagram - https://www.instagram.com/legallybb_/?hl=en

Facebook - https://www.facebook.com/legallybb/

LinkedIn - https://www.linkedin.com/company/legally-blonde-blind/

Key Points:

0:00 - Introduction!

1:05 - Why did I decide to make this episode?

2:25 - Why do parents share about their child’s disability on social media?

6:55 - Issues Surrounding Informed Consent

11:39 - Issues Surrounding “Raising Awareness”

12:18 - Inspiration Porn

13:50 - Exotification and Objectification

15:20 - Amplifying our Differences

16:50 - Not Everyone Needs to be an Ambassador

18:00 - Centering Parents

18:49 - What should parents do?

Resources:


https://themighty.com/2017/08/what-pictures-not-to-post-online-kids-disabilities/
https://www.themobilityresource.com/blog/post/gone-too-far-when-posting-about-your-childrens-health-crosses-the-line/
https://www.pewresearch.org/internet/2015/07/16/parents-and-social-media/
https://www.washingtonpost.com/lifestyle/2020/01/31/parents-online-sharing-can-be-particularly-problematic-autistic-kids-heres-why/
https://nymag.com/intelligencer/2017/04/youtube-family-vloggings-dark-side.html
https://aliceleme.medium.com/until-children-are-protected-family-youtube-channels-should-not-exist-5d89429835a6
https://www.newstatesman.com/science-tech/2016/04/why-youtube-mums-are-taking-their-kids-offline
https://neoreach.com/family-vloggers/

Transcript - https://www.legallyblondeblind.com/post/22-before-posting-about-your-child-s-disability-listen-to-this