Sick and Tired of Misunderstanding

This blog post is dedicated to Amy Lee Fisher. May she rest in peace.

Social media has given chronically ill women a voice in a once silent world. Our whole view on what sick is has been challenged, shaped, and changed by social media outlets, especially Youtube. In the past, sick people, especially women, were expected to be unseen. They would stay at home in their beds wearing pajama pants and big shapeless sweaters, no makeup, and unkempt hair. What is the point of getting dressed and presenting your best face if you are constantly battling to keep your body healthy? This mindset is archaic and it has truly been exhilarating to see women presenting the disabled female community in a positive way. 

We may have our view on disabilities completely wrong. Instead of focusing on healing sick or impaired people perhaps we need to focus more on providing all people with a chance at a good quality of life. A cure is nice, but there are many people who would choose not to get rid of their disorder. They have lived with it for so long it is a part of their identity. It is who they are and they are proud of it. We should embrace this mindset and celebrate our differences and provide new and exciting ways to include all people. No longer should we expect people who are different to hide at home until they get better; while many of them never do. One of the most insulting things you can say to someone with a chronic illness is, “get well soon.” There are so many ways to do make the world more accessible; from Braille and audio literature to special dietary menus in restaurants. There is no reason not to celebrate life in all its forms. 

Dr. Phil caused quite a stir when he said that “100 out of 100 relationships that involve caregiving fail” and that “You can be his caregiver. You can be his lover. You can’t be both.” It caused the #100out100 to trend as members of the chronic illness community showcased their romantic relationships, proving Dr. Phil wrong. People who are blind, deaf, or sick can and do contribute in wonderful ways to relationships. They do this by taking care of themselves and their image. Pursuing their hobbies and staying loyal to the people who they have invited into their lives.

Statements such as the ones that Dr. Phil made showcase the negative mindset that society had and still has in many ways towards disabilities. It encourages people to feel bad for themselves and to hide away from the world until they feel better or a cure is found. The problem with this is that often a cure is not found during their lifetime. Do people like Dr. Phil truly think that a person with a chronic disorder should never experience love, hobbies, beauty, or the basic pleasures of life? This is wrong and unfair. 

We are now seeing an influx of blind or visually impaired female YouTubers who are deep into fashion, makeup, and being seen. This might seem like the most confusing concept. Why on earth would someone who cannot see care about their makeup, pick and choose different outfits, and color their hair? And yet, there are many women on the internet obsessed with presenting themselves in a fun and positive light. It is truly showing the disabled community in a whole new way. Maybe it isn’t so bad to be disabled? Perhaps a blind or sick person can have a deep, meaningful life and enjoy the same things that other people do.

So many people are not provided the opportunity to grow old and pass on way too young. It may seem like a person with a chronic illness is limping on through life and is miserable, but there is no reason to believe this. As we adopt the fact that people who are sick can be vibrant members of society perhaps we will see people adopt a healthier mindset towards life in general. Perhaps we will find that kindness and acceptance spread and life becomes better for all.

Let us meet a few of these voices that are rising in stardom on Youtube. One of the most famous is Joy Ross. She can be found over on Youtube under her name “Joy Ross” in addition to Facebook under the name “Through the eyes of joy” and on Instagram as “joyrossblind.” Joy has Uveitis (a form of arthritis). This condition also affects her in other ways by causing skin infections. Her eyes are very small so she has fake eyes that she wears over her damaged ones. While Joy was born blind in one eye, she is currently completely blind. 

She recently received The Silver Play Button for 100,000 followers. Despite the fact that there are many other blind YouTubers who have reached this goal, she is the very first to get her name written on her Silver Play Button in Braille. Joy reached this goal by priding herself on keeping up her own unique style with her sleek, black hair and her perfectly done makeup. 

Joy has a thriving, full life. She is raising two daughters named Georgiana and Isabella (Georgie and Isa for short). She has had two guide dogs. First, we followed her adventures with Antonia and currently her recently retired guide dog, Arabella. Joy has a voice to melt the hardest heart. She is in the worship band at her church and is an active voice coach. She has a blossoming family, hobbies, and a job. 

Then there is Molly Burke. She is originally from Toronto, Canada. She currently resides in British Columbia, Canada, when she’s not on the road. She has Retinitis Pigmentosa which causes her to have tunnel vision. She has no peripheral vision. She also has Nystagmus. This makes her eyes almost dance and move so she is unable to focus on anything. Molly is not completely blind. She can see some lights and shadows. 

Molly currently sports silver-blonde hair but has enjoyed many other colors over the years, such as purple and pink. She loves to ensemble outfits and accessories. She even has videos where she tries on outfits from different websites. She loves textures, glitter, and bright clothing. Despite the fact that she can’t see much of it, she’s one of the best-dressed people around. Her retiring guide dog Gallop (formerly Gypsy) is a very large black dog, a Labernese. She is currently waiting for a new service dog from the Mira Foundation. He seems to tower over this petite, glittery woman. Despite the fact that he wouldn’t harm a fly, he probably makes a great guard dog. He truly completes Molly’s look while providing a much-needed service. She also has a beautiful long-haired toroise shell cat named Lavender.

Not much stops Molly from enjoying life. She loves smoothies, sushi, training her guide dog, and public speaking. She is an anti-bully activist. When she was in 8th grade she broke her foot. Being blind and on crutches was a challenging experience. One day some girls took her out to the woods at lunch and broke her crutches. They abandoned her in the woods alone. Thankfully she had her phone and her mother found her. She finished the rest of 8th grade from home. This inspired her to travel the world speaking at schools and other events because she says she lives in a world “not designed for her.” 

Molly has been through a lot in her life. It has certainly not been easy. She has moved around, endured bullying, and various health scares. Her parents are Irish immigrants and she had a traditional Irish accent up until the day she developed vocal cord nodules. From there she took speech lessons and walked away with a regular Canadian accent. This is how we got the soothing Molly Burke voice. 

Molly has made quite a name for herself outside of Youtube. She wrote a book for Audible called “It’s Not What it Looks Like.” She was a real Arie model. Arie hires people who are not traditional models. Molly is very short, coming in at 4’ 10.5”. She used to host 2 tv shows when she lived in Toronto. And she was on a commercial for Dove Shower Foam. She can also be found collaborating with other Youtubers playing games such as “Guess the Youtubers voice.” She encourages us to jump and see how far we can go. 

Jessica Kellgren-Fozard, formerly Hayes, is British. She is blind in one eye, deaf, and has other chronic illnesses. She is brain blind. The eye itself is fine, but her brain cannot process what she sees. She has limited mobility in her hands and has trouble doing day-to-day tasks such as drinking. She solves this by using a straw. Jessica cannot hear her own voice very well, yet she speaks clearly. She is an open lesbian and supports the LGBTQIA+ community. She has a blossoming marriage to another woman by the name of Claudia. Claudia announced her pregnancy right after Christmas 2020 and they are due in June 2021. Congrats ladies!

Jessica’s joy for life knows no bounds. She has a pin-up look that she is completely dedicated to. She is always wearing a dress and has her hair curled. She figured out to curl her hair and put on her own makeup despite the fact that she has limited sight and can only use two fingers on each hand. If that’s not determination I don’t know what is. She is celebrating herself instead of hiding and mourning her health. 

She has a positive attitude and has taught herself many different talents, including sign language. Jessica has a rich, full life that those of us without any restrictions would beg for.  She highlights her antique bed and her two dogs. She could probably talk about paint drying and draw in a riveted audience. She is an activist for the disabled community, gay rights, and the British Quaker community. She is just a very happy person and not afraid to be herself on camera. 

And then we must speak about dear Amy Lee Fisher. Amy passed away on April 01, 2021, from complications from her chronic illnesses. Amy Lee Fisher was a big name on Youtube. She had two YouTube channels called “Amy’s Life,” and “Amy Lee Fisher.” She was originally from the UK and currently living in Australia. She was primarily known for having Ehlers Danlos and Gastroparesis and POTS. EDS causes such symptoms as stretchy skin and extreme flexibility. Her Gastroparesis was so bad that she couldn’t digest any solid food and relied on feeding tubes and later TPN to survive. It might seem weird to include her but she was also blind in one eye. 

Amy spent her days going through her care routine. Her job was to stay alive and she did it with gusto and flair for as long as she could. She was constantly in and out of the hospital undergoing various procedures to maintain her health or from surprise issues. This would be enough to discourage the toughest person, but not her. She used her Youtube channels and other various social media outlets to bring us along on her journey. She approached each new health problem with a positive mindset.

Amy had an avid beauty care regime. She always had her nails and hair done and a smile on her face. She cared for herself and had respect for how hard her body fought. She had been shamed for how thin and frail she looked, but still went out of her way to find a cute outfit and show the world. It would be easy to give up on looking nice when your body is fighting itself. It often caused her to vomit and have various other unpleasant reactions. Yet, she had an immense amount of respect for herself and you couldn’t help but send her some love. 

Amy enjoyed journaling and vlogging. She had several close friends and supported her boyfriend Tom. Anyone would be lucky to have her by their side supporting them. If someone can fight that hard to live, imagine how much they will fight for you if needed? Chronically ill people may not be able to show up in the same way as other typical people can, but they still have a lot to offer in a relationship of any kind. There are more important things to life than driving or going out to eat. Emotional support, loyalty, and consistency bring what money cannot buy, stability. 

A common thread that we see in these women’s lives is their celebration of life. They find joy in many different ways. They showcase their beauty and find ways to highlight it. They have immense respect for their bodies and what they have done to function. Their positive attitudes are contagious and they have mastered the art of sharing their world view in a good way. As we take the time to learn from the voices of these brave women perhaps we can become more like them and seize life by the horns. 

While these women have been blind or visually impaired most or all of their lives, many people lose their vision as they become old. It is very common for those of us who reach old age to develop cataracts, glaucoma, or lose sight due to accidents among various other ailments. As we age very few of us are spared the development of some form of chronic health condition. People such as Joy Ross, Molly Burke, Amy Lee Fisher, and Jessica Kellgren-Fozard have the advantage. They have had much more practice navigating the world blind and have developed skills to do it with grace and beauty. If you became deaf in your 80’s wouldn’t it be nice to know sign language? Unfortunately, as we grow older it becomes more difficult to learn new things. Not impossible, just not easy.

Chronic illness has taught these beautiful women resilience. Despite their handicaps, they have achieved what many people look for throughout their entire lives and miss. From immaculate fashion senses to friendships, hobbies, and romantic relationships. Many of them have their own merch. They are not afraid to go down paths and talk about taboo subjects. They fearlessly shout from the rooftop and will not be silenced or hideaway unseen in their homes.