Lolo hails from Stockton California and moved to the Los Angeles area after high school, almost 10 years ago. She became physically disabled at 14-years-old after being diagnosed with A.L.S (Lou Gehrig's disease) and now, at almost 30-years-old, she uses a motorized wheelchair for her primary ambulate needs. Despite the limitations in her physical movement, she has received her Bachelor’s Degree in TV Production, pursued a freelance career as a video editor, and currently produces her own reality YouTube webseries Sitting Pretty. Sitting Pretty is about her life and experiences as a physically disabled woman. With new episodes every Sunday, they range from her everyday experiences, to personal feelings, to the how-to’s of life, all being unique to a physically disabled person and much more. The channel shows that life is meant to be lived and not just “survive,” that anyone has the ability to dream and manifest, and she’s inspiring others in the process. Her goal is to provide the world with a new view of what the disabled community looks like and how they live, show fellow disabled people that their lives can be lived fearless as well, eliminate the intimidation that comes with disabled lifestyle, and ultimately inspire anyone to simply enjoy life. Lolo has made some major strides as a YouTuber by being a panelist at the very first Disabilities Discussion Panel at the 7th annual VidCon. She is determined to use Sitting Pretty as the platform for change and awareness to such a grand group of people and she will not stop until the disabled community gets the recognition they deserve.
Subscribe to her YouTube channel: youtube.com/SittingPrettyLolo
Follow her on Instagram and Twitter: @itsLOLOlove
Like her on Facebook: facebook.com/SittingPrettyLolo
Contact/Business Inquiries: LoloSittingPretty@gmail.com
Previously a museum educator in science and technology, ElleJay Volpe is passionate about information and empowerment. As progressive disease forced her to take a new perspective, she became increasingly aware of the disability community and advocacy issues. As she found community, she discovered a new way to learn and teach.
In 2010, she earned her B.S. in Natural Science with minors in Chemistry and Mathematics. Among other conditions, she has a rare, congenital vascular disease called Klippel-Trenaunay Syndrome that immediately affects the deeper muscular tissues and the lymphatic system in her right leg to her hip in the form of tumor-like malformations. This causes mobility issues, extreme, constant pain, circulation issues throughout her body, and carries life threatening risks like aneurysm, deep vein thrombosis, and pulmonary embolism.
Over the years, she noticed there weren’t many visually appealing or very innovative mobility and adaptive products that were available mainstream or in the common consciousness. She believes that in order for the disability community to thrive, we need to create our own sanctuaries and seek out our own beauty and function. This was the inspiration for Frill-Ability, where adaptivity and style meet harmoniously.
"Make Good with Your Ability" is the sign off you'll see in posts and also the brand's motto. It’s a reminder to create something wonderful with whatever you have because whatever you have is definitely wonderful.
Check out her website: www.frill-ability.com
Follow her on Instagram and Twitter: @frill_ability
Like her on Facebook: facebook.com/frillabilitylife
Brett (and Oliver)
Raised in Kingston and residing in Ottawa, Brett is a third year undergraduate student at Carleton University (internationally renowned for its accessibility). Since becoming quadriplegic at the age of 18 while training on Canada’s national trampoline team, Brett has spent his last four years navigating the disability community, discovering new interests and volunteering. Currently 22, Brett’s eyes are set on completing a PhD in Disability Studies to become a professor. Notably driven by activists like Mia Mingus, he aspires to be an influential voice among Canada’s next generation of disability rights enthusiasts.
Aside from academics, Brett engages in public speaking opportunities that addresses topics associated with the intersectional identity of disability. Having experienced his transition from able-body to his present body, he finds meaning in publicly challenging social norms. Lastly, having been a competitive trampoline gymnast his whole life, it was only natural for Brett to jump back into sport. Now a wheelchair racer, he competes in Athletics lowest Paralympic class, T51 (quadriplegics with no triceps). With heavy focus on the 400m, 200m and 100m events, Brett intentions on being a finalist at the Tokyo 2020 Paralympic Games.
Follow Brett's instagram @bretters_
RACHEL ‘THE MIGHTY RAPOO’
19 year old, self-confessed social media addict and creator of art, Rachel comes from a little city in the South East of Northern Ireland. After a particularly intense game of bowling with German exchange students, she was christened with the nickname “The Mighty Rapoo”, or “Rapoo” for short.
In November 2015 Rachel was a pedestrian survivor of a road traffic accident. Rachel is proudly declaring that LIFE ROLLS ON and aims to empower and advocate for the disabled community she has now found herself in.
Rachel obtained her diplomas in Performing and Creative Arts and Theater Studies in June 2015 and since then has been working both self-employed jobs and for local arts companies including The Beat Carnival. It was during her studies that she discovered her love for performing comedy and dipping her toes into all aspects of Performing and Creative Arts. In July 2015, she set up her own business under the name RSSM which has been put on hold as she recovers in her first year following her injury. Rachel spends most of her days modelling, making art, performing and trying to convince her dog Buster that hopping up onto her lap while she’s transferring is not helpful in any way.
Social media has become a huge factor in Rachel’s new life, allowing her to continue working and promoting her work in the Arts Sector, and enabling her to connect with similarly disabled people from all around the world.
She hopes to bring adaptive fashion to the forefront to show that no matter what body you find yourself in, you can still decorate it with your own personality and flair, and absolutely slay the runway that is our planet earth.
To catch some of Rachel's infectious enthusuasm, connect with her on social media
Emet is a rabbinical student with a contagious smile and a passion for social justice. Originally from New York, Emet recently moved to Philadelphia to continue his studies. He graduated with his BA in liberal studies from SUNY Purchase in 2016 and wrote his thesis on American Jews in the 19th century. In 2014 Emet learned that he has the genetic disease Ehlers Danlos Syndrome, which causes joint subluxations and dislocations, autonomic nervous system dysfunction and GI motility problems. He uses a manual chair with a smart drive as his primary mode of mobility equipment. Emet has also been out as transgender since 2010 and has been an advocate for trans people ever since.
Currently, Emet serves on the boards of both GLSEN and TSER and writes for Trans.Cafe. He also is involved in disability advocacy with both NCIL and ADAPT. Emet has a popular tumblr blog for chronically ill people also known as “spoonies” and provides advice, comfort, and humor for those struggling with illness. Emet hopes to use his rabbinical studies as a way to include more disabled people in Judaism and to make faith more inclusive.
You can find him at:
Originally a Texan, Christina moved to Chicago, Illinois to pursue a Master’s degree in Clinical Psychology with a specialization in child and family therapy, to follow her lifelong dream of advocating for child trauma victims. After graduating, Christina was diagnosed with Lupus SLE and several other chronic diseases including Hypothyroid Disease, and Polyarthritis. Lupus SLE, a systemic autoimmune disease, occurs when your immune system attacks healthy tissue all over your body causing unpredictable fevers, weakness, and polyarthritis! (arthritis in more than 5 joints).
Due to the unpredictable and chronic nature of her diseases, Christina has had to make adaptations to not only her life, but also her lifelong dream. Through the creation of her own LLC, she is able to follow this dream of advocating for child trauma victims and raise awareness of child trauma, while working from home as needed. Another adaptation she has made since the onset of her diseases was becoming dependent on a manual wheelchair for mobility. She quickly learned how difficult finding fashionable and comfortable clothes for differently-abled people is and remains a passionate believer that each person should be able to look and feel both attractive and comfortable, despite any limitations to their mobility.
Follow Christina on Instagram: @C_Cammille!
Helen is 51, Irish and married with 4 children ages 24, 22, 15, and 14.
She used to be a grammar school teacher, and retired due to ill health over 10 years ago.
Helen considers herself pretty new to the world of wheelchairs, she’s just got her ‘assisted wheels’ - and has only recently started attempting to "re-socialise".
Her rare neurological condition has all sorts of symptoms, that she describes as numb ‘bits and pieces’, to constant pain. It's an Arnold Chiari Malformation.
2 years ago, Helen underwent brain surgery and as part of the complications after that, she has incredible fatigue, a rare sleep disorder, and her legs “aren't up to much...”
Since the brain surgery her recovery time has been very sedentary. She says she owes her sanity to a combination of things:
- Her incredible husband and children.
- That she is STILL able to be a musician: she sings, plays, and directs choirs - She’s even formed one since her disability. She LOVES music.
- The times when she’s not arranging music, is spent knitting or crocheting...it's an addiction she started in neurosurgery ward, but she’s am hooked well and truly now.
- She social networks a bit. When she was given a diagnosis she found no information and so she decided to blog her way through life with it...and she still does.
“It's cheaper than therapy... and I get to scream or laugh as I need to.”
You will find Helen:
Tweeting as @helenhamill
Her blog is atleastihaveabrain.wordpress.com
Cat currently resides in London, England, where she is undertaking her PhD at the London College of Fashion. Her research focuses on physically disabled women’s relationship with clothing and fashion, exploring things such as practicality, identity and representations of disability in the fashion industry.
She is passionate about creating dialogues of disability that are well-rounded and empowering, spaces where disabled people control the narratives of their lives and are able to challenge stigma, stereotypes and ableism. She believes that current representations of disabled people seen in the media do not reflect the complexity, diversity and beauty of disability and that positive representations can influence and empower, whether these representations are in film, fashion, politics or online.
Cat has been disabled her whole life, a wheelchair user for the past three years and a clothes obsessive since before she can remember. She loves expressing herself through her clothing, and believes that everyone should have the right to dress in ways that empowers and makes them feel good.
Outside of academia, Cat is a contributing editor of Doll Hospital, a bi-annual art and literature print journal exploring mental health.
She also runs a small business designing enamel pins called Normal Land (named for a lyric by one of her heroes, disabled punk singer Ian Dury). Her first pin (a tattoo-style heart emblazoned with the word DISABLED) reflects her proud identity as a disabled person.
Riki is 26 and from the city of Winnipeg, Canada, which also happens
to be the home of wheelchair rugby, the sport she started playing
shortly shortly after becoming a wheelchair user. Riki plays on both
the local club team and provincial team, and credits rugby for helping
to build her confidence, stay active, and keep engaged with the
community. After chronic health problems and repeated concussions took
their toll on Riki, she found that embracing life as a wheelchair user
worked much better than stubbornly trying to create a different path.
As a result she has developed a strong interest in all things
adaptive, including sport and fashion.
As a current university student, she is studying both International
Development Studies and Disability Studies with the hopes of working
to further develop community based programming for those with
disabilities. Riki is one of the founders and a current co-leader of
the Winnipeg chapter of the Autistic Self Advocacy Network (ASAN), and
in April 2016 traveled to Geneva Switzerland to testify at the United
Nations Committee on the Rights of Persons with Disabilities.
Riki is on social media on: