This site was named ‘Under My Umbrella’ because of the nature of this site relating to issues around disability, and the condition that has the most impact on my life. I was born with a mild form of congenital rubella syndrome, which has caused me to be visually impaired, have a heart defect, developmental delays growing up, not to mention that I had always been small for my age when I was younger too, with a head that is smaller than the average adult, low muscle tone, and a few other minor problems. But the eyes and heart are the main contributors to my barriers and struggles in life I think. I have a whole host of other medical conditions too, both CRS related and not related to the condition, but I won’t list them all, To learn more about congenital rubella syndrome, please go see the ‘What is congenital rubella syndrome? page for more information and background of the condition here. https://mypurpleumbrella.home.blog/what-is-congenital-rubella-syndrome/
I was born with bilateral congenital cataracts, which was operated on to have my lens removed, leaving me aphakic. This also caused bilateral nystagmus, which I call dancing eyes. Most people describe it as wobbling eyes, so my vision moves constantly from side to side. I also have strabismus, which is a convergent squint, and a lazy left eye. My eyes don’t work together as a tandem, they work more like a tag team. When one eye is working the other is sleeping, and when that eye gets tired, the other will take over. The left eye being recessive means that it does more sleeping than work. Hence the lazy eye. Despite all this I still have a good amount of sight.
As I mentioned I have a heart defect. I was born with a hole in my heart, which again has been operated to have it corrected. But what doctors never tell you is, that your heart will never be normal, even after corrected and some symptoms may still persist. Alongside the symtoms of CRS, the heart may have contributed to some of my developmental delays. But as an adult I have caught up on most of those and come a long way, so all good there.
I suppose you’re wondering why the name ‘Under My Umbrella.’ Well the answer is that I see congenital rubella syndrome as an umbrella of multiple disabilities and defects, all in one place. Hence the word umbrella in the tittle, although of course the site won’t just revolve around CRS. It will involve issues around disabilities in general, so under my own conditions there lies many a subject of a wider variety. Which will focus on my thoughts and feelings on many different subjects, which is why I thought to use “Under” and my in the tittle.
Having experienced negative attitudes and treatments towards me throughout my life, and seeing discrimination and how the world can be unjust to those with a disability, I am passionate about disabled rights and diversity and acceptance of people with disabilities. I want more tolerance and for us to be seen as human beings, not broken shells that don’t feel. We are people with feelings, emotions, personalities, ideas and dreams just like everyone else in the world. I want to bring awareness to that. I want to open people’s eyes and bring awareness to society on the things disabled people have to deal with on a daily basis, and in their lives. I want to help change attitudes I can.
While I want all these things, I am by no means using this platform as an advocate, because I feel I cannot speak for everyone with a disability, I am no advocate and certainly not an activist of any kind. I am simply just a person who has a few disabilities, expressing my thoughts on certain subjects and issues and expressing how I feel and what I think. Although if I can help eliminate discrimination even just a little bit with my blogs, then I will be happy, because in a small way I do hope I can do that, even just a little. I do hope my blogs help in a way and make a difference to a more positive attitude towards disability and people with disabilities. That’s the main effect I want my site to have. I really do want to make a change.
I hope you enjoy the content I post and take something away from them that helps make a better world for all. I can’t grantee that all my posts will promote disabled rights, which is why I say I am not advocating as such. It’ll be rants and ramblings, which ‘could’ possibly include the negative side of disability and the disabled community too. But that is yet to be seen. The majority of the site will be based on trying to get people to see the positives, or how things need to change, and to hopefully help the world see us in a better light.
Thank you for taking the time to visit my site and read my posts, I hope you like what you see and stick with my journey through this site. And just remember, we are all human. Be kind to one another, always!
#DisaledRights #Disability, #DisabilityAcceptance, #DisabilityAwareness, #PurplePower