In in the United States, there are more than 4 million small businesses and 1.5 million nonprofit organizations, including 350 thousand religious congregations. These organizations have a profound impact on our lives, but most do not have the money or knowledge to address accessibility issues. Over the past few months, I have spoken with small business owners and community organization leaders and I hear a common refrain, “I want to do more to support people with disabilities, but I don’t know where to start.”
My name is Rachael, and I am excited to share with you the work that Accessible Community, a 501c3 Charity, will be doing over the next year. I founded Accessible Community to bring together individuals with all types of disabilities, business owners, community leaders, and experts in order to solve a problem that affects all of us: Making our communities more inclusive for people with disabilities.
Our communities needs an inexpensive path forward that allows non-experts to assess facilities, websites, technology, and business practices to ensure each supports people with disabilities. If our small businesses and community organizations can’t support the 56.7 million Americans with disabilities, everyone loses out. But this failure presents a complicated and critical issue; Accessible Community plans on solving it.
Over the next week I will be publishing several introductory blogs talking about:
- Accessible Community’s business plan (Every charity needs a plan),
- Lessons learned starting a charity
- Next steps including tools being beta tested, and
- How you can get involved.
For today’s blog, I want to explain a bit about myself and my motivation (drive, passion, obsession perhaps?) with making our world more inclusive.
I was born in rural Maryland with a congenital birth defect, but was fortunate to have experimental surgery at 6 months that mostly resolved the issue. While the surgery allowed me to live a life without accommodations, I grew up having to go to John Hopkin’s regularly for testing and check-ups. These trips reinforced the knowledge that I was just a little bit different and my parents reinforced that I was very lucky.
In fourth grade, a puppeteering troupe called Kids on the Block, performed at my school. This group teaches about social and physical diversity through Bunraku puppetry. I lived in a very homogenous area and I was so energized when I saw them, I set a goal to become a puppeteer. Within a few years, I had done it and I spent 7 years teaching about cerebral palsy, visual impairment, diabetes and other topics throughout my county and state.
In college, I studied theatre, art, historic preservation and art management. I learned about architecture and building rehabilitation but in the process of all this, I learned to love libraries and information systems. After graduating, I went on to study usability and human computer interaction within these contexts. I have my PhD in this area and working with University of Maryland’s HCI lab brought me right back to studying how individuals with disabilities work with computers. I have spent the last 15 years working and teaching in usability engineering and accessibility.
In 2016, I developed chemical sensitivity. This is a severe allergy to certain chemicals. For me it means that if I am around perfumes, air fresheners, cleaning solutions, smoke, or other scented chemicals I experience severe headaches, watery eyes, issues breathing, and sometimes an upset stomach for up to 2 days afterwards.
Chemical sensitivity is a hidden disability and it has completely changed my life. In the first few weeks, I had to leave orchestra seats at the opera (a birthday present) because the person next to me had been smoking and I was sick by the end of the performance. I had to stop shopping at many of my favorite stores. Either I can’t use the fitting rooms because of fresheners or after selecting everything, I find perfumes or scented candles next to the cash register. After leaving my potential purchases at several stores because I couldn’t buy them, I mostly stopped trying. I had to stop eating at my favorite restaurant because they use a lemon cleaning solution and clean other tables during dinner. Even at restaurants I can still eat at, I have to plan carefully ahead of time because I can’t use the bathrooms. Poor planning for me leads to trying to use a restroom with my face mostly covered and holding my breath. Try it sometime – It’s a skill.
These days, I mostly shop online. Everything my family owns and uses is unscented or natural scents. I have accommodations set up at work. When we go somewhere new, my kids check the place out before I enter. I either get a calm “All clear mom” or a panicked “Don’t go in! Don’t go in!” Nothing is halfway for them. I move where I sit at church when someone with perfume sits down next to me. I rarely go places with assigned seating and you’ll find me in the back of the room at school plays, conferences and other events. I almost always use the stairs or will skip an elevator I called because someone else wearing perfume got in.
The result of all this: Even though I had been working in the area of inclusiveness and disability awareness for years, I realized was just how much of daily life has barriers that stop people from interacting and functioning in their communities.
Governments and large corporations are tackling this issue through the work of the ADA National Network, DisabilityIN, the W3C Web Accessibility Initiative and others. Experts provide larger organizations with information and assistance fixing buildings, websites, and business practices, but small businesses and community organizations have few options for getting help. These organizations can’t afford support from the experts and the experts can only provide so much support pro bono or at reduces rates. Accessible Community is a 501c3 charity designed fill that gap by providing small organizations the tools, skills, and information needed in an easily digestible form to become more inclusive of people with disabilities. The next blog will discuss our way forward to achieving this.