Do you consider yourself an advocate for disability awareness or a disability ally? Since starting the blog, it’s been part of the title I use when describing my vision for the blog, but growing up I didn’t think about the title, just speaking up on something when necessary. The journey for this blog has been a roller coaster one that I’ve been enjoying. It has hardships and lessons that I didn’t expect, still I’m grateful for the gifts that it has given me as well, particularly knowledge of important days when it comes to disability awareness. I’ve grown up with my disability, but it wasn’t until I embarked on this journey of purposefully advocating for disability awareness that I actually became aware of how I in fact did not know. As Cerebral Palsy Awareness month comes to a close, I want to touch upon why that is an issue so in today’s post I’m sharing my thoughts on Disability Awareness: Representation, and why it matters not just for me and other members of the disability community, but society as a whole.
Disability Awareness Representation Matters For The Community
Cerebral Palsy has given me so much, unique perspectives, opportunities, and an appreciation for the type of people that I have in my circle, but it has made aspects of life challenging because it made me different from the norm and growing up different was the last thing I wanted to be. Did you know Cerebral Palsy’s color is green? Why? Green represents growth and renewal of life, vibrant and happy times. I didn’t know that until I started this blog nor that March 25th was National Cerebral Palsy Awareness Day, March was CP Awareness Month or that July was Disability Pride Month, the list goes on. To know that is to celebrate it and growing up, that is something that I would have loved to do.
Awareness of disability gives us a chance to put the differences front and center and celebrate them, give people with disabilities a chance to see and celebrate the achievements of those in their community as we were able to do with “Coda” last night. This was a chance to show the world just what we are truly capable of when they take a second to look at more than the label of the disability, and gives us hope that the children with disabilities won’t have to face as many obstacles when they are going after whatever it is that they want. We all have our own capabilities and limitations, but it’s important to see that representation in different industries.
The Disability Community & Social Media:
Before starting this blog, I didn’t use social media often and that is something I regret. No, not for adorable cat videos, beautiful makeup tutorials or even connecting more with friends and family across the globe. My interest lay in something else, something invaluable. Community.
The concept for The Sitting Beauty Diaries first came to me when I was reading some of the newer posts in one of my facebook groups about life with a disability. I started reading more posts, but it wasn’t until I started using my Instagram account to share my life with CP and my love of fashion that I truly saw the value that social media could have for people with disabilities. I connected with and learned from other disability advocates, went to a virtual summit for women with disabilities where I had the chance to talk with dozens of other women about their experiences and listen to talks by some influential women in the disability community. The Rollettes, a wheelchair dance team, is all about empowering women with disabilities through dance and changing perspectives about life with a disability. I loved the virtual experience during the shutdown and I hope that if you can go in person to Rollettes Experience, you take the opportunity,
Social media allows us to close the gap that is created by geography and illustrates that different lives, locations, languages are irrelevant when you have something that is so much a part of your life that few people can comprehend. These types of platforms play a part in my outlook and positive mindset towards my disability, but it has also taught me a few things about being a content creator as well. I was reminded by another content creator with a disability that the mindset you choose to live by disability or not is your own and whatever version that is, it’s authentically your story.
Adaptive Fashion… It’s A Work In Progress
Fashion or sense of style or whatever you want to call it, should be available to everyone regardless of disability or body type, but it’s not, at least not yet. Adaptive fashion, still not a fan of this term, first found its way into the industry as a major player through Tommy Adaptive: an adaptive fashion line through the Tommy Hilfiger brand. Since then more brands have entered this previously overlooked market with brands like Slick Chicks, Zappos and to name a few.
Some believe fashion is frivolous, others believe it so much more. Your outfit can share your mood, facets of your personality or pay respect to a time that is special to you. The options are limitless. Well, unless you’re disabled. Adaptive fashion may have been around for a few years now, but there is still this idea that people with ideas don’t want to care about what they wear. People with disabilities love wearing stylish outfits for work, running errands, or a fun day, getting dressed up for a night out with friends, date night, and celebrating a special occasion. Style for those who love it is just as important as it to an able-bodied fashion lover, the only difference is that someone with a disability may have to be more selective of what they wear thanks to how the disability may affect their body.
I am thrilled that adaptive fashion is a tangible thing and no longer just a concept. This representation shows that brands big and small are willing to listen and learn how they can help this community. As more models with disabilities wear these clothing lines in marketing materials, the more it sparks hope for the next generation of people with disabilities looking for someone who looks like them in the media.
Many believe that disability awareness is for those living with a disability as well as the people closest to them. Here’s the thing: the concept isn’t quite so simple. Disability awareness matters for people living with disability, yes, for all the reasons I listed and more, but they aren’t the only ones who benefit from awareness of disability and changing perspectives on living with disability. Society as a whole benefits as well. Curious as to how? Keep reading to see how society aspect when referring to disability awareness
Disability Awareness Representation Matters For Society
Society’s view of what life with a disability is like is full of misconceptions. So much so that it’s mind boggling. Disability awareness and representation show society that living an amazing life with a disability is possible.
Open Dialogue & Education
Curiosity, misconceptions, and loss of opportunity. This is what happens when disability is not talked about. Disability is treated like a bad word, something to say only in hushed tones, while children are told not to ask questions. The reality is open- dialogue provides situations where people can have appropriate questions answered, misconceptions put to rest and get correct information or reasons for when children ask questions. There are various disabilities that affect different people in different ways so it’s not always one answer fits all in most cases, but there are universal things that can and should be done for people with disabilities and that’s where proper education and willing to talk about comes in, of course the people engaged in those activities have to actually be willing to listen and learn, which is not always the case.
No one person wants to be your go-to on all things disability nor should they be, but there are some situations that I can address right now that people make when talking to people with disabilities.
- Don’t start a conversation with “what’s wrong with you?” What happened to you? Or any variation of these phrases. The person you are talking to owes you no of their history, if you want to know for specific reason: start up a conversation and ask if they mind talking about it for such and such a reason. Keep in mind, they still don’t have to answer you, but you phrased the question that wasn’t outright rude.
- If you notice a person with a visible disability struggling to do something and you want to help, Do Not just start helping. Ask if they need help if the answer is yes, how can I help you are what do you need me to do are good options. As a lifelong wheelchair user, I can’t tell you how many times someone has “helped” me in a way that was just not helpful at all. Ask first.
- Do not lean or touch any part of someone’s wheelchair/mobility device without permission. These devices are personal and the equivalent of entering someone’s personal space or touching them without permission.
Advancement in Technology and Various Industries Due To Unique Perspectives In The Workplace
The biggest disservice to society regarding people with disabilities may be bypassing the opportunity to have their unique thought process in the various industries of the workplace. “As people with disabilities we are living in a world that is simply not designed for us, that means everything is a lesson in problem-solving.” I can’t remember who said this, but in my opinion truer words have never been spoken. You think of alternate solutions simply because you can’t do things the “normal” way. When it comes to work, this means out of the box thinking to get things done, new product ideas, or efficiencies in addition to the obvious: a bigger talent pool of workers that have skills for various industries.
The world may be open to catering to a previously underserved market in the disability community when it comes to various industries such as fashion and beauty, believing that people with disabilities didn’t care how they looked. Now Tommy Hilfiger and Zappos have additional lines, Olay has a new product line with packaging taking accessibility into account, new companies are coming to the marketplace, models with disabilities are now the face of campaigns and walking the runway. Amazing, and this is one industry. There is so much more out there to do. However in order to do more for the community and open themselves up to more business, they will have to do so with the help of those in the community which means hiring them. Like I said: the advancement of technologies, products, and aspects of business wouldn’t just be for people with disabilities, the companies would benefit too and are living money on the table, by not creating spaces where people can shop and work without accessibility concerns.
People with disabilities want to live their best lives: traveling, working, spending time with friends, having families of their own, and everything in between, but somehow for one reason or another society has told us that this is not possible for you if you have a disability. The concept of a disability is the antithesis of all of these and because of that when people with disabilities try to do any of the above it is harder and more expensive when it doesn’t have to be that way.
I’m a person with a disability and I am proud to be one this Cerebral Palsy Awareness Month. I love that I can celebrate it this month, but there needs to be a continuous effort to bring disability awareness to sports, film, fashion, beauty, on and on for representation and correcting misinformation. Thank you for sticking through this post with me. For those of you who have disabilities reading this, I hope it is a reminder that there is a living with a disability you can live your best life, even if it seems like there are a litany of obstacles in your path, For those of you who don’t have disabilities, I hope that this sparks conversations about disability and how you can be an ally. Disability awareness matters, representation matters
Until next time,