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    Sundance Film Festival Shines the Spotlight on Disability Authenticity

    With one-in-five people having a disability in the U.S. today, the lack of representation – just 2.3 percent of characters in the 100 top-grossing films of 2019 and 8 percent in family films – means that millions of people are unable to see themselves reflected in media. The 2022 Sundance Film Festival (January 20 – 30) will provide an opportunity for audiences with various disabilities to see themselves represented – all from the comfort of their homes through the virtual festival site. This year, several films feature disability in the plot, including “892,” “75,000,” “Cha Cha Real Smooth,” “Chilly and Milly,” “I Didn’t See You There,” and “Sharp Stick,” among others. Ensuring an Accessible Festival The 2022 Sundance Film Festival being virtual this year also brings a desire to be accessible to all. According to Sundance, all films will be available with closed captioning on every English language feature film and short or subtitles on non-English films, which allows viewers who are Deaf or Hard of Hearing to view films. In addition, the New Frontier Spaceship includes closed captioning and text chat features. All premiere screening Q&A’s, along with most of the Beyond Film program of panels and events, will include ASL interpretation. In addition, 11 feature-length films and two shorts include audio description (AD) for blind and low-vision viewers. Most importantly, the programmers have said they will conduct ongoing accessibility audits of all Sundance-hosted online venues and events throughout the festival. In addition, the festival has provided a way for anyone to request an accommodation or offer feedback. To offer feedback, please contact the accessibility team at or the accessibility hotline, 435-776-7790. Below please find a guide to several of the films featuring disability in the plot or talent with disabilities. Feature (U.S. Dramatic Competition): “Cha Cha Real Smooth” (Director and Screenwriter: Cooper Raiff) – Premieres January 23, 1:45 p.m. PT From writer-director and actor Cooper Raiff comes the story of a New Jersey party starter, Andrew, working the Bar Mitzvah circuit after college who meets his match in a suburban mother Domino (Dakota Johnson), then begins sitting for her autistic daughter Lola (Vanessa Burghardt), bringing him closer to their family. Newcomer Vanessa Burghardt, who is autistic herself, plays Lola. RespectAbility team members provided consulting services on Burghardt’s role in this film. Feature (U.S. Documentary Competition): “I Didn’t See You There” (Director: Reid Davenport) – Premieres January 24, 10:45 a.m. PT Spurred by the spectacle of a circus tent that goes up outside his Oakland apartment, a disabled filmmaker launches into an unflinching meditation on freakdom, (in)visibility, and the pursuit of individual agency. Feature (Premieres): “Sharp Stick” (Director and Screenwriter: Lena Dunham) – Premieres January 22, 5:30 p.m. PT Sensitive and naive 26-year-old Sarah Jo lives in a Los Angeles apartment complex with her influencer sister and her disillusioned mother. She is also a wonderful caregiver to Zach, a child with an intellectual disability. Eager to lose her virginity, Sarah Jo embarks on an exhilarating affair with Zach’s father, Josh. In the wake of the doomed relationship, Sarah Jo grapples with heartbreak by dedicating herself to unlocking every aspect of the sexual experience that she feels she’s missed out on for so long. Feature (U.S. Dramatic Competition): “892” (Director and Screenwriter: Abi Damaris Corbin) – Premieres January 21, 10:30 a.m. PT When Brian Brown-Easley’s disability check fails to materialize from Veterans Affairs, he finds himself on the brink of homelessness and breaking his daughter’s heart. With no other options, he walks into a Wells Fargo Bank and says, “I’ve got a bomb.” As police, media, and family members descend on the bank and Brian, it becomes clear he’s not after money — he wants to tell his story and have what is rightfully his, even if it costs him his life. Feature (U.S. Dramatic Competition): “Dual” (Director and Screenwriter: Riley Stearns) – Premieres January 22, 5:00 p.m. PT After receiving a terminal diagnosis, Sarah commissions a clone of herself to ease the loss for her friends and family. When she makes a miraculous recovery, her attempt to have her clone decommissioned fails, and leads to a court-mandated duel to the death. Feature (Premieres): “Living” (Director: Oliver Hermanus) – Premieres January 21, 11:00 am PT In 1952 London, veteran civil servant Williams has become a small cog in the bureaucracy of rebuilding England post-WWII. As endless paperwork piles up on his desk, he learns he has a fatal illness. Thus begins his quest to find some meaning in his life before it slips away. Documentary Short: “75,000” (Director and Screenwriter: Moïse Togo) – Available On-Demand with a pass throughout the entire festival Highlighting the biological aspect of albinism, 75,000 focuses on the genetic and hereditary abnormality that affects not only pigmentation but the physical and moral conditions of people living with albinism. Documentary Short: “Chilly and Milly” (Director: William David Caballero) – Available On-Demand with a pass throughout the entire festival Exploring the director’s father’s chronic health problems, as a diabetic with kidney failure, and his mother’s role as his eternal caretaker, Chilly and Milly is a combination of 3D-modeled/composited characters, with cinéma vérité scenes from an autobiographical documentary shot over 13 years ago. Midnight Short: “Appendage” (Director and Screenwriter: Anna Zlokovic) – Available On-Demand with a pass throughout the entire festival A young fashion designer must make the best of it when her anxiety and self-doubt physically manifest into something horrific. Talent With Disabilities When successful actors and producers disclose a nonvisible disability, such as a learning disability or mental health condition, they help normalize these disabilities in both the entertainment world and for the general public who consume their films and television shows. In some cases, actors with disabilities appear in films that do not necessarily have disability in the plot. In several of these instances, actors with disabilities are playing roles that have nothing to do with their disability. “After Yang” features an actor with insomnia and who has dealt with addiction, Colin Farrell. “Alice” features an actor who has anxiety, depression, and polycystic ovary syndrome, Keke Palmer. “AM I OK?” features an actor who had breast cancer, Tig Notaro, and an actor who had a burst intestine, Sean Hayes. “Cha Cha Real Smooth” features an autistic actress, Vanessa Burghardt. “Emily the Criminal” features Aubrey Plaza, who had a stroke when she was 20 years old that caused temporary paralysis and expressive aphasia. A couple of years later, she had a transient ischemic attack while on the set of “Parks and Recreation.” “F^¢K ‘€M R!GHT B@¢K” includes disabled actress Emily Kranking, who has cerebral palsy. “Nothing Compares” features Sinead O’Connor, who has mental health disabilities. “Sharp Stick” features a writer/director and actor with Ehlers-Danlos syndrome and OCD, Lena Dunham, as well as two disabled actors, including one with Down syndrome and one with cerebral palsy. “The Worst Person in the World” features an actor with PTSD, Renate Reinsve. The plot also involves cancer and pregnancy. Additional research provided by Eric Ascher.

    Community Voices

    lack of support for primary Immune deficiency diseases

    What is behind the lack of support for primary Immune deficiency diseases?

    Why do so few primary immune deficiency patients get the support they need? Why is it so hard to raise awareness? These are questions I have pondered much of my adult life. I have fought much more than a rare and life threatening disease, I have had to fight ignorance as well. Its not just me. I have observed time and time again with other PI patients and their social circle as well. I have both experienced and heard about situations that if you were to fill in the blank with another disease in place of PI it would rarely happen. Parents being judged instead of supported as their child is dying, People unwilling to take what are by all logic reasonable precautions to protect a patient, and seriously sick patients being treated as selfish fakers and drama queens instead of being offered the respect and support they deserve. Enter Coronavirus. Now we have Facebook statuses urging everyone not to panic because only people with weak immune systems will die!

    Life was never easy for anyone born with a disability. In fact we are living in the best times ever. It is believed by many that the Spartans left their weak and imperfect infants to die on mountain tops or threw them off cliffs. Throughout early history disabilities were often seen as a curse and the disabled were thought to be able to give the evil eye. Disabled people have been burned, hanged and in more modern history thrown into institutions where they had little chance of ever joining mainstream society. Even today there is ritual killings of people with albinism in Malawi. Given our history is it any wonder those of us with invisible disability are often given a hard time or are left feeling not very cared about?

    I get why we don’t get the concern or funding for research as other diseases. Most people take their immune systems for granted and know very little about how it works or what happens if its not working properly. There is little about PI in the media or in film so people lack the framework that they have for many other diseases. Primary immune deficiency diseases are also rare and aren’t contagious so the attitude is why should we care or donate towards finding a cure? Its not me or mine.. Even if it is!

    But we are a culture that claims to value children. Why is so little funding given to fight for a cure for genetic diseases? rare disease is a leading killer of our children. Nearly a third of the children with rare disease will not live to see their 5th birthday. rare disease is responsible for 35% of all deaths (of any cause) during the first year of life! Less than 5% of Rare Diseases currently have a FDA approved disease altering therapy that permanently cures or stops the disease.

    Right now is where you may want to stop reading this because I am going to tell you what I really think. Here it is. There is serious discrimination against those born with genetic weakness throughout mankind and the animal kingdom that is passed down. Studies on mice and other animals have shown that some information such as fears can be passed down to future generations. It is well known that all human babies all have a fear of falling and loud noises. also describes a Collective conscious in his in 1893. Collective conscious is ideas, morals, beliefs that are common to the average person.

    In birds something called Siblicide occurs when resources, specifically food sources, are scarce. The strongest or most aggressive bird kills off its siblings to eliminate competition for food. Or sometimes its the parents that choose to feed only the strongest bird, while the weaker one squeaks for food until it eventually dies. This ensures that the bird with the best chances to live and best genetics passes its genes on down the line.

    I think this is deeply ingrained in the human race. Those with genetic defects are weak or the weakness is a sign of intellectual or personality defects. I know first hand the opposite to be true. Adversity builds strength. Its easy to be born healthy. Its hard to survive when you have a lot stacked against you. Even getting a diagnosis or adequate medical care is often a journey that takes many years when you have a rare disease. I know children that understand more about the human body than do most healthy adults. Genetic weakness yes- inferiority absolutely not! Most of us have so much to offer the world- if given the chance.

    I have been blessed to have known many smart and compassionate people, people who do not believe in their heart or hearts that individuals with genetic defects should just disappear like a weak hatching. And for those who secretly do, patients like me aren’t going anywhere quietly. Modern medicine has been very kind to me. Without the discoveries of antibiotics and later immune globulin there is now way I could have survived Blood and plasma donors are my rock stars! Without you people like me wouldn’t live so very long. The love of my mother and later my husband are why I survived when society may have had me tossed away. To both of them I am eternally grateful. With love almost anything is possible. Even the weak and defective can thrive.

    Mehak Siddiqui

    Living With Albinism and Nystagmus

    Spell check doesn’t recognize the word nystagmus. Neither do most people when I explain that it’s the reason why my eyeballs constantly shift from side to side, sometimes slightly wobbling, sometimes darting rapidly. As a person with albinism, I was born with congenital nystagmus and the resulting weak eyesight. Whenever I get into candid conversations about my vision, the question I’m asked most often is, “Does your whole world keep shifting about too, because of the way your eyes move?” Thankfully, it doesn’t. But focusing on anything specific is pretty difficult. That’s why I can’t recognize faces easily, especially from a distance or within a crowd. Reading signs — whether in the streets, shopping malls, or at airports, train and bus stations — is impossible, as is deciphering menus printed on walls behind the counter at cafes and restaurants. Technology helps. I click photos of signage or text on my phone and zoom in to make better sense of the world around me. I’m extremely fortunate to have vision that’s considerably better on the ocular spectrum of people with some form of albinism. And I acknowledge that I’ve had things a lot easier because of a privileged background with access to resources and the support and help of family and friends. Nonetheless, nystagmus slows me down. Just like I zoom in on the phone screen, I need to zoom in on — get awkwardly close to — everything in my physical reality too, whether it’s a book I’m reading, food I’m enjoying, an ATM I’m withdrawing cash from, or the laptop I work on as a digital nomad reaching for my dreams of traveling the world. Text-to-speech is among my favorite inventions and I saved up to recently splurge on a MacBook Pro for the way it’s so simple to have any text read out loud to me at the tap of a button, and for the unrivaled trackpad that makes zooming in and out a breeze. I often get quizzical looks from people who don’t immediately understand why I hold my phone screen so close or hunch over my laptop when working, but I’m all too used to being stared at and it doesn’t make me as uncomfortable as it once did when I was still an anxious and timid teenager. People often overlook that living with any kind of different abilities often leads to other issues like low self-esteem, anxiety or depression. Growing up, I have had to work through my fair share of inner turmoil to accept myself and not let my eyesight or my albinism define me. As a “brown” person who is whiter than most Caucasians and with hair that a boy I liked once told me is described as “strawberry blond,” I’ve dealt with unwanted attention and probing personal questions all my life. I’ve grown to be more amused than offended by the confusion that my Indian identity causes, particularly when I hand over my passport for scrutiny at airports or hotels. “You don’t look Indian,” is something I’ve heard all my life, most of the time with a hint of a positive connotation like it’s a good thing. And it’s always strange to experience white privilege when I’m not really white — I’m often treated like a foreigner in my own country. My appearance has ceased to bother me as much as it did when I was younger, but that’s not to say I don’t get self-conscious. I often find it uncomfortable to hold eye contact and still feel wracked with shame when accused of not smiling or waving back at someone or failing to understand their gestures. I never pre-book rides from airports in foreign cities because I know I’d never be able to find my name on a placard in a crowd of strangers. Sometimes, I can sense people pitying me, particularly when I share that I can’t drive, and they even go on to recommend ophthalmologists who helped someone they know. “Why don’t you just get surgery?” I’m asked. As if I’d never have thought to look into this option myself. Even with all the advances in medical science, there is still no reliable fix for nystagmus and even if there was, I’m not entirely sure I’d jump at the chance of getting my eyes operated on. I’ve made my peace with living with nystagmus, using public transport and — thanks to technology once again — Uber. I take heart in the fact that this way of getting around is also better for the environment. I grew up feeling it wasn’t fair how I couldn’t see as well as everyone around me, how I had to sit right up front in class throughout school and still not be able to read the board, and how I couldn’t play ball sports to save my life. But all these years later, cultivating a sense of gratitude has changed my perspective. I am deeply appreciative for the wonderful support network I have and the ways in which I’ve been able to reach for my dreams. I’m grateful for my job and the ways technology helps me out, and I am hopeful that companies and governments will invest more and more in improving accessibility for a truly inclusive world. There are still moments of frustration when I think if it wasn’t for my eyesight, perhaps I would have achieved a lot more than I have so far, but I refuse to wallow in such negativity. I refuse to make my nystagmus an excuse for not going after my dreams. Just like with everything else in my life, I’ll take my own time to get where I want to be.

    Community Voices

    Youtubers with chronicillnesses and disabilities

    Youtubers with chronic illnesses or disabilities

    Polar Warriors | #BipolarDisorder

    ResetwithTerry | Graves Disease

    FranklyFranca | Graves Disease

    Emma Tara |

    Shaina Leis | Maladaptive Daydreaming

    Leah Dawn | ME, IBS, Emeraphobia & #Depression

    Crafting For Almost Everyone.

    Dodie – Depersonalisation Disorder

    Cara – Cerebal Palsy

    Sarah rose – #Fibromyalgia

    Life Of A Blind Girl – Retinopathy

    Fashioneyesta – #SeptoopticDysplasia

    Zoe’s Clan -EDS & co

    Serhat Eronal – #SpinalCordInjury

    Jessica Chelsey | #Lupus

    WheeledNomad | EDS & co

    Wheels2walking | Injured Paraplegic

    Able Family | Injured Paraplegic

    Jordan Bone| Injured Paraplegic

    Juliannado | Special Needs & Crohns

    Alma Guerrero | #SpinaBifida

    Fae System | Antisocial PersonalityDisoder & Bipolar

    BriaAndChrissy | OCD & PTSD

    Anna Campbell | Bipolar

    The Labryinth System | #DissociativeIdentityDisorder

    Crystal | Gastroparesis

    Liddy Alvarez | Fibromyalgia

    Kay Bre | Fibromyalgia

    The Life Of Me Smile Magee | Cancer, #Gastroparesis, Dysautonimia ETC

    Tayarra Smith | , Sherman’s Disease, #CyclicVomitingSyndrome & spine GI issues

    Grace Nicole | Schitzophrenia

    Rachel StarLive | Schitzophrenia

    Shane Dawson | Depression & Body Dysmorphic Diisorder

    Izzy MS | #MultipleSclerosis

    Chronically Lyss | #Arthritis

    Ellen Jones | Autism

    Kay Maynard | Autism

    MaxluvsMya | Autism

    Rhiannon Salmons | Autism

    The Aspie World | Autism

    Assistance Dog Adventures | Chronic Lyme

    Lemons N Lyme | Chronic Lyme

    Kim And Ross | Lyme, & ME

    Prisha Bathia | Sturge Weber Syndrome

    Lauryn Elizabeth | Hyperprolactinemia

    Shontelle Scott | Gastroparesis

    This Girl Audra | , IBS and OCD

    Gabrielle Ferguson |

    Krissy Mae Cagney | & Celiac

    Steadfast Soul |

    Brooke Houts | #Anxiety & Depression

    Nine and Vine | #BloodCancer

    Jpmetz | MS

    Invisible I | & Autism

    Ostomy Diaries | Crohn’s disease

    SarahWithStars | #ChronicPain

    Trisha Paytas | BPD & PID

    The Frey life | #CysticFibrosis

    Eyeliner and Empowerment | #CerebralPalsy

    Robyn Lambird | Cerebal Palsy

    But Ya Don’t Look Sick |

    Molly Burke | #RetinitisPigmentosa

    Painful Hilarity |

    Lucy Edwards | #Blindness

    Kelsey Darragh | #TrigeminalNeuralgia


    Themitowarrior | #MitochondrialDisease

    The Killen Clan????

    EMILIA VICTORIA |#Endometriosis

    Kelsey Morris |#HipDysplasia

    Holly Vlogs | Crohn’s Disease

    In The Lyme Life | Lyme Disease

    Kiki Chanel | #CyclicNeutropenia

    Hydrohayley | Hydroceohalus

    This Gathered Nest | Down’s syndrome

    Foolyliving | Autism

    I am still ME

    PerfectlyKnitBeauty| #NeuromyelitisOptica

    Channon Rose | , PTSD, , ADD, Endometriosis

    Ally hardesty | ADHD

    JD Dalton | #Albinism

    ASL Stew | Deaf

    WheelsNoHeels | Spinal Cord Injury

    Rikki Poynter | Deaf

    Kathryn Morgan |Hypothyroidism

    Pain Doctor | Chronic Pain

    CFS Health | ME/CFS

    Young Chronic Pain | Chronic Pain

    MultiplicityAndMe | Dissociative Identity Disorder

    Stephanka | #AplasticAnemia

    DisociDID | Dissociative Identity


    Alivia Marie |

    OhSoAdrianna |

    Amythest Schaber | Autism

    Invisible I | & Autism

    Sitting Pretty Lolo | ALS

    The Mandaville Sisters | One Handed


    You Look Okay To Me | #ChronicIllness

    Caito Potatoe | Autoimmune #KidneyDisease

    A Thousand Words | Adrenal Fatigue

    Living With Addison’s | Addison’s disease

    Madison Decambra | BPD

    KaraLou |

    The Dale Tribe | Type 1 #Diabetes

    Claire Wineland | Cystic Fibrosis

    Jessica Kellgren-Fozard | HMPP, MCTD & co

    Katie Scarlett Speaks | Chronic Pain

    Just A Skinny Boy | Autism

    Sasha Aimey | Endometriosis & Arthritis

    ALifeLearned | Mental Illness

    Hannah Witton | #UlcerativeColitis

    Georgina’s Journey | POTS & ME/

    AGirlWithLyme | Chronic Lyme

    Olga Chronics |

    Sam&Alyssa | Lupus

    ChronicallySaltyy | & co

    The Files | & co

    Arianna | , & co

    Zebra to Zebra | & co

    Chronically Jenni | & co

    Morgan Grant | & co

    Simply Hannah | , POTS & co

    Abby Sams | , CRPS & co

    Izzy kamblau | & co

    Rebellious Story | & co

    Christina Doherty | & co

    Not Your Average Zebra | & co

    Simon and Martina | & co

    Amy’s Life | & co

    Annie Elainey | & co

    Chronically Kimberly | & co

    Chronically Jaquie | , Mito & co

    Sophie’s Life | & co

    Life With Stripes | & co

    Jordan Bone | Spinal Cord Injury

    Rikki Poynter |Deaf

    IDrankTheSeaWater | Tourette’s & Mental Illness

    Angie and Ruby | Stromme Syndrome

    Josh Sundquist | Amputated Leg

    Anne Spicer | Crohns & gastroparesis

    Sleepy Santosha | Adrenal Insufficency

    Live Hope Lupus | & co

    Emma Blackery| ME

    Yoga My Bed & ME | ME

    Moly Christopher | /ME

    CFShealth | ME

    Bethxxx | ME

    Miss Adventure | ME & mental illnesses

    MegSays | ME

    Ann Twirls | Chronic Pain

    VlogBrothers | & Chronic pain

    Fibro Mom |

    Service Dog Vlogs |

    Chronic illness and disabilities

    The Vlogging Murrays | Preemie & Chronic pain

    Keira Rose | Dermotilonania, Anxiety,

    Beckie brown |


    Maya Imani | Schitzophrenia

    John Green |

    Savannah Brown | Eating Disorder, Anxiety &

    TrichJournal | Body Focused Repetitive Behaviour Disorder &

    Emily Rose |

    Bonitajunita | Trichotilonania

    Allie Malin | Trichotilomania

    TheMaddieBruce |

    Sammy Marie | &

    Madison Decambra |

    Tara Lou |

    Lace & Lashes | Crohns Disease

    Sally Boebelly |

    Crohn’s disease

    Ashley Jeneatte| Crohns Disease

    Abby Green Osteogenosis Imperfecta

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    Mandy Ree

    Blindness and Albinism: Praying Away My Disability

    Mandy. As a kid, I grew up the Catholic way. I went to doctrine classes every Wednesday and made my sacramental milestones, from my First Reconciliation, my Holy Communion and then finally my Confirmation. My grandmother is a devoted Catholic whose nightly ritual was based on prayer cards and rosary beads. I even had great aunts that were nuns. During my studies, I read many stories about Jesus healing the blind and the “crippled and lame,” and at one point, I was totally convinced that one day, I could pray my rare form of albinism away. I spent many nights praying; rosary beads and prayer cards became a cluttered mess on my end table. I watched shows like Benny Hinn’s in the morning, hoping he could beam some of that magical energy my way and I’d be cured. I prayed every night I would have friends, that nobody would ever hurt me again, that I would be happy. At age 12, my doubts became real. My nose stuck in a Bible during class wasn’t because I chose to. It was because I needed to make my family happy. Plus, my Game Boy on mute kept me from too much boredom. I eventually gave up believing because at one point, there seemed to be nothing to believe in. I had a hard journey going through my teen years, trying to find out who I was and whether or not life would get better for me. Little did I know that God wasn’t the only thing I had to believe in. Turned out I needed to make that change for myself. Wishing on a crucifix was not my only option. Turned out I could heal myself through hard work and determination. And eventually, things did get better. Despite the fact that I wasn’t “healed” the way the Bible says, meaning I still am legally blind, I feel as though my life has come full circle. Those dreams of my preteen self have finally come true. I finally have friends and a meaningful life. I still question my faith every now and again, and I’m not as religious as I used to be, but I do believe someone, somewhere, has pushed me in the right direction. It may not be the God that raised me, and I can’t take all the credit. But somehow here, I am thriving and surviving and overcoming adversity every day. To whatever guiding force is up there, thank you for helping me see things as they are. Follow this journey on Legally Blind Bagged.

    Kirsty Russell

    10 Dangerous Myths About Albinism, and the Truths Behind Them

    Albinism is one of the least understood conditions around the world, and it doesn’t help that popular culture persists in perpetuating many myths. Myths that are simply false. These myths have existed throughout history and continue to negatively affect the lives of many people with albinism (PWA), even to this day. In some cases, these myths are actually endangering lives, particularly in parts of Africa where ritualized violence against PWA is on the rise. Here are 10 of the most common myths surrounding albinism, and the truths behind them: 1. Albinism is contagious. Albinism is a genetic condition passed on by both parents. Each parent must be a carrier, and both must pass on an albinism gene for someone to be born with the condition. It cannot be caught and is not contagious. 2. Albinism is a curse or a punishment. Albinism is a genetic condition that results in a lack or total absence of melanin (pigmentation) in the body. It is not acurse or a punishment for past wrongs. It is purely an autosomal-recessive genetic condition that affects around 1 in 20,000 people in North America and Europe. 3. PWA are less intelligent. Albinism does not have an impact on a person’sintelligence. Albinism merely affects the level of melanin in the body. It has nothing to do with the brain, and most people with albinism have average levels of intelligence. However, due to the lack of melanin present in the development of the eyes, most people with albinism suffer from significant vision impairment which can affect learning and education outcomes. 4. PWA have red eyes . PWA actually have eyes that range from blue through to brown. However, the lack of melanin that characterizes the condition means light is not absorbed by the eyes and is instead reflected back out, which sometimes leads to a reddish glow in certain lighting conditions. 5. PWA all have white skin and hair. Not all PWA are entirely white. PWA from an African background can instead have yellow or orange hair and can also have some level of skin pigmentation. There are many types of albinism too, some of which are characterized by reduced melanin, rather than a complete lack of it. In these cases, PWA will appear to have some pigmentation and will therefore not have the stereotypical white skin and hair. 6. PWA are evil . This is a myth perpetuated by society and reinforced by Hollywood. Albinism is, for some, a confronting condition. Anything to do with visible difference is invariably met with distrust. Throughout history, most PWA have beenstigmatized, demonized and ostracized, all because of how they look. Apart from lacking pigmentation and having a vision impairment, PWA are exactly the same as everyone else. And just like everyone else, they are not born inherently evil. 7. PWA can cure HIV and their body parts possess magical properties. In2000-2013 the UN Human Rights Office received more than 200 reports of killings and dismembering of people with albinism for ritual purposes in 15 countries. It is also commonly believed in parts of Africa that having sex with someone with albinism can cure HIV. This is not true and has led to violent rapes and rising HIV infection rates in the albinism community. PWA do not possess magical properties nor the power to cure disease. 8. Albinism only affects appearance. Melanin is integral to developing skin, hairand eye color, however it is also vital for the development of healthy vision. PWA often suffer from significant vision loss due to the lack of melanin present during the development of the eyes in the womb. Together with reduced visual acuity, albinism is also characterized by rapid, involuntary movement of the eyes (nystagmus), difficulty dealing with glare (photophobia) and problems with distance vision and depth perception. 9. PWA cannot go outside during the day. PWA can go outside at any time but need to take extra precautions when out in the sun. Protective clothing, sunscreen and a hat are required all year round to minimize the risk of skin damage from the sun. 10. PWA are the result of the mixture of two races. PWA are the result of genetics, pure and simple. The rates of albinism in Africa, in particular, are higher than elsewhere partly due to a long held culture of intermarriage. So the greater prevalence of albinism is due to a limited gene pool; it’s not the result of the mixture of two races. It seems to be a sad fact of life that those who look different will always be treated differently. The history of albinism and of PWA, even now, confirms this. Hopefully learning a little more about the condition will help people better understand it and hopefully lead to greater acceptance by society. Follow this journey on My Home Truths. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Mandy Ree

    To the Girl Who Was Just Diagnosed With Ocular Albinism

    Well, hello there, little me. You had quite a bit of a rough day, haven’t you? You spent a day not doing baby things, like napping or playing with your toys, but instead found yourself with your parents in a doctor’s office not too far from Orlando. You were poked and prodded and had light shined into your eye, all because your mom and dad noticed you weren’t making eye contact or tracking like a “typical” baby should. That day was a frightening day for all involved, which ironically landed on all days, the day the Challenger exploded. A double day in history for your family. I ain’t going to lie to you, little me — ocular albinism is a label not everyone wants, being legally blind and living a life restricted in more ways then one. Not being able to drive or participate in sports, being denied friendships and typical kid-like things because you’re different. It’s a devastating thing to know you might never fit in. You and your parents will find themselves crying some nights, wishing this would never happen to you and that it would magically go away. Life is going to be hard; vision therapy and hospital visits will replace things like Gymboree or day care. Instead of cutesy circle time songs and finger games, you will constantly be tested by doctors and forced to explore the world in different ways through your vision therapy teachers, who will follow you up until you’re in high school. People will judge you, interrupt your normal life with mobility lessons and IEP meetings, and make your life a living hell. Nobody seems to take you seriously, and you will always struggle with trying to fit in. But your tough and busy youth is just a small part of your life. With every bad experience comes a new opportunity to grow and prove the naysayers wrong. Everything you learned that you thought would be a waste of time actually comes in handy. Independence. You will earn it through hard work and determination. The dreams that got lost on that day in 1986 will come true. You’ll go to college and graduate, move out of state and land your dream job at Disney. There really is light at the end of the tunnel. The next couple years will be hard, but don’t worry. It is worth it in the end. Although you can’t see it right away, the world is a beautiful place. You will live your life essentially limitless. Your eyes will not define you. Your strength to overcome will. Don’t be afraid, little one. You got this. Follow this journey on Legally Blind Bagged. The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Mehak Siddiqui

    5 Things Not to Ask Me About My Visual Impairment

    I live in India and have albinism. While that attracts plenty of questions of its own, it’s the ones about my visual impairment that I usually find more difficult to answer. Particularly these: 1. “What do you see?” It’s difficult to explain. And the answer often depends on a range of extraneous factors like the time of day or the lighting in the room. Sometimes, I can recognize you from a distance; other times, I don’t even notice when you’re right in front of me. Also, I may be extremely myopic, but I can still make my way around without my glasses on. So please don’t gawk. And whatever you do, never wave your fingers in front of my face asking me, “How many?” That’s about the most annoying thing you could possibly do. 2. “Why are you squinting?” Because I need to. Sometimes, I just can’t see very well, despite having my glasses on. And there’s no doctor or surgery that can fix that at the moment, so please don’t recommend your ophthalmologist. I’ve lived with my condition for 28 years. I’ve done all the research there is to do and seen the best doctors I can afford. I go for regular check-ups and get updates about the latest procedures available, so please keep your advice/suggestions to yourself, no matter how well-intended they may be. This holds true even if you are a doctor yourself or related to one. 3. “Do you need help?” If I do, I’ll ask for it. At least most of the time. Usually for things like crossing busy roads or reading menus printed on walls at fast food joints. But when you try to help me without me asking, it is incredibly offending, like you are making me feel inadequate. I can manage most tasks completely well; I just take a little longer to do them. For instance, at the ATM, I’m a little slow with pushing all the right buttons. That doesn’t mean you have to try to help me. Chances are you’ll just end up confusing me and I’ll take even longer than usual. 4. “Why don’t you drive?” Because I love myself and respect others too much to risk causing an accident. Driving is great, it is empowering. I would love to drive myself around, but the truth is that my eyesight just isn’t good enough. Public transport can be very empowering in its own way — it gives me extra time to read or check emails or just plain daydream. And it’s kinder to the planet. 5. “Didn’t you see me smile/wave/gesture at you?” No, I didn’t. And I wasn’t snubbing you. I will never understand you unless I come right up to you and stare at whatever signs you are making, which kind of defeats the purpose of gestures, I suppose. So no, please don’t put me through that. If you want to get my attention, speak to me. My hearing is sharper than my sight. Follow this journey on Mehak Siddiqui’s blog. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.