Developmental disability awareness isn’t something that happens in a vacuum. We’re promoting these interviews with four lived experts in developmental disability during this awareness month, but as we all know, “awareness” is ongoing learning, and ongoing application. Unless and until we have an accessible society, we’ll keep going.
Here’s a short reel of Kari, introducing these interviews:
In addition to gathering some of my own thoughts, I wanted to try to capture how other disabled folks I know think and feel about the whole phenomenon of developmental disability awareness, and its impact on or in the disability community at large (to catch up on what a developmental disability is, please read this post, “What is a Developmental Disability?“)
In responses as diverse as the folks I interviewed, I learned something about the way the notion of disability awareness still needs to progress from an attempt to understand how we are – different, strange, “special,” a threat to the status quo! – to a willingness to accept and embrace who we are and how we live our lives.
Alex, Daniel, Jay and Heather graciously gave their time and energy to this. All four have very different lives from one another.
Developmental Disability Awareness and Us
Kari: How would you like for people in general to be more aware of your disability?
I would like people to see me as a human being rather than label me as a disabled person. I would also like people to recognize me as a thoughtful and poetic person who can do great things even with high-functioning autism. Thank you for asking!
I think my disability is fully exposed to the public, and they decide on my disabilities. I can’t change people’s perception of my disabilities once they see me, especially now in Los Angeles, where people like me can easily be confused with an addict or someone without a home. I am constantly exposing myself to create awareness wherever I go because there are more like me out there.
No matter what the situation or setting (working, socializing, and showing affection), I am bringing awareness of myself to help others. In my younger years, I would often say, “Thank you for coming out,” whenever I saw another person with disabilities. It is a tiresome “revolving door” issue due to the generational base perspective on society, even in my community. Still, I find it rewarding when people get together and fight to make the changes that will open the doors to more awareness.
I don’t have a wish for people to know more about my disability. Everyone who knows me in any significant capacity is very aware that I have cerebral palsy. I’m not a proponent of “awareness campaigns” because they are generally ineffective. I state this since many people tend to try to appeal to the pity and sympathy of others instead of attempting to promote actual understanding and acceptance. I believe that the disabled people who participate in these campaigns are often used as symbols and taken advantage of from a publicity standpoint.
I believe that this is changing slowly, but the paradigm is shifting too gradually and at the great collective cost of people who are disabled.
We are missing opportunities that we should have because people don’t want to do the right thing by making society more accessible. We are denied educational opportunities, job opportunities, access to healthcare, and so many other benefits just because, at the very core of rampant discrimination that still exists, there are those who don’t believe that people with disabilities should even be fully visible in society in 2023.
I am, of course, aware that there are exceptions to the rule, but these are my general feelings that are precipitated on 5+ decades of lived experience as a disabled person and an expert in disability etiquette.
I would like people to educate themselves on wheelchair accessibility. I want them to know what to look for and go beyond flat entrances and/or elevators. This is a big issue in my social life. I’m tired of having to make all the plans because others won’t teach themselves.
A non-disabled woman taught me the two hacks I use most to determine accessibility. She saw my frustration with calling venues and took it upon herself to find a better way. She showed me how to use Google Street View, which allows you to view a picture of the front of an establishment, so you can see if the entrance is flat or has a ramp. They also now list accessibility as part of amenities. If you click “See More,” or even just on the address of a place in Google, you can see everything from delivery options to accessibility. Yelp also has this feature and is usually very accurate.
I’m tired of people using their lack of knowledge as an excuse to not take initiative. Even if they said, “I found a place but I’m not sure, can you double check for me?” I’d be happy knowing they tried and kept trying til they felt comfortable doing it on their own.
Kari: What do you think is the biggest problem caused by a lack of awareness? And how do you think disability organizations can “do awareness” better?
I would say discrimination, and even a lack of knowledge. People need to know that disabilities are no laughing matter, and not an excuse to abuse disabled people. I would say, “yes” to the notion that disability organizations “do awareness”, but it is also heartbreaking to know that so many people in real life still remain ignorant about disability.
Lack of exposure to whatever issue people with disabilities are working on to improve ourselves and our community. Also, the lack of event gear to enhance self-esteem in whatever the person with a disability is doing. It may be writers, artists, fashionistas, dancers, and actors who need an outlet or exposure to others to achieve awareness.
Organizations have begun the process to “do awareness,” and some have been more successful than others. The problem is the “revolving door” that keeps people out of the loop. The solution is for disability centers to have an awareness program at all levels of education until people get used to the idea that having a disability is no different than the issues confronted by women’s studies, Chicano studies, African-American studies, and any other study bound to disseminate understanding and foster a sense brotherhood and sisterhood between people with and without disabilities.
Inclusions can go as far as creating awareness. Still, until we have a system that will minimize the “generational revolving door” to spin, the disability experience will be the same in each future generation.
Disability organizations can do better work in raising acceptance levels by really listening to people who are actually disabled – and by implementing their suggestions when it’s possible to do so.
This means allowing disabled teens and adults to speak for themselves instead of turning to their caregivers or parents for input. Take the legitimate concerns of those disabled teens and adults seriously, and believe them at face value, even if you do have to verify certain facts and details.
Of course, I understand and respect that there are those who can’t speak for themselves effectively yet (very young children, for example). There are also those who have trouble communicating because of their disability. They and their opinions should still be considered fully and fairly. One way to do this would be to implement alternative ways to communicate with these individuals by using technology more efficiently and effectively.
Another way to address this issue is to allow disabled teens and adults who are able to do so and who want to do so to address the public directly. This will make a lot of people uncomfortable, but if organizations are really serious about promoting acceptance, this should -and will – matter less than achieving the goal of higher acceptance for people with disabilities through exposure/representation.
I think awareness needs less statistics and inspirational crap and more practical/real life stuff. For example: How to make your business/office space more accessible; 15 fun and accessible date night ideas; Sex: The Talk Before The Walk or How to Respectfully Ask Your Disabled Friend/Date About Their Sexual Access Needs. You get my point, more real-life things for real life situations. It would take a lot of the pressure and stigma off both sides and possibly give way to real awareness and acceptance.
Kari: What do you wish other disabled people understood better about your own developmental disability and how it affects your life? What would you like them to be more aware of in this “developmental disability awareness month”?
My disability is part of my own identity, and I am still a human being with the ability to live life upon the one and only Earth, just like everyone else on the planet Earth. Thank you for asking!
I wish that other people with disabilities understood better that my disability doesn’t define me; I define my disability according to my experience in life. Some people are pleasure seekers, others seek thrills; I am an “experience seeker.” I seek life experience with my disability no matter how bad or good my life is; it is the only life I will have while having a disability. I have had experience: work, being gun-pointed and knife-pointed, marriage, having a family…all of which is my “normal” life. My disability didn’t stop me from writing a book or running for the city council. My disability made it harder for me, but that is life. And life can’t wait for you to start seeking whatever you seek.
I wish other people who are also disabled understood more clearly that my situation is as unique as that of any other disabled person. I’m not a personification of an erroneous, collective stereotype. I’m allowed to experience the full gamut of emotional feelings and reactions that anyone else may also experience. My choices and the ways in which I address the challenges of having a disability are mine alone.
I will not apologize for earning my accomplishments and the rewards that come with them. I refuse to allow others to bring me down just because they may not agree with how I live my life as a person with a disability. I try very hard every day to pay others that same form of respect in any way that I can. We should cheer each other on rather than denigrate one another unfairly.
I wish they knew it’s not fun to startle me on purpose or make fun when I startle. I may drop things, accidentally crash my chair, or be really stiff for a few minutes afterwards. It’s not a joke, quirk, or toy you can trigger on purpose. Just because you know one person with CP doesn’t mean you know me. Also, power wheelchair users struggle far more socially, so if you are disabled and can walk, don’t compare your friendship and dating woes to mine. STFU and listen!!!
Meet Alex, Heather, Jay and Daniel:
is a ballet dancer and music nerd, they believe in saying the quiet part out.
Get to know Jay better in their earlier interview with Kari, “I Thought I Was Just Lazy“
Heather Hobbs Woodard
is an English professor who is obsessed with words on all fronts. She and her husband, Trey, live in Birmingham, Alabama, and they are the proud parents of feline babies. They will celebrate their 27th wedding anniversary this year. They enjoy hanging out with friends and family that includes 13 nieces and nephews, eating well, and watching college football and basketball in their severely limited spare time.
was born in Santiago, Chile and came to the US at the age of 15. He has cerebral palsy, and he is hard of hearing. He has always been interested in working and promoting the socialization of people with disabilities, and as a systems change advocate. All his life, he has fought for inclusion and believe everyone should have the right to strive for success. He strives to improve the lives of people with disabilities in as many ways as possible.
You can find his book of poems here.
Alex Andy Phuong
became a published poet because Emma Stone inspired him to write passionately after watching her Oscar-winning performance in “La La Land.”
Developmental Disability Awareness
Developmental Disability Awareness isn’t just a month. It’s an ongoing affair. For those who don’t have developmental disability, it’s about understanding those of us who do. For those of us who do have developmental disabilities, it’s about learning across our board: there are a lot of disabilities making up developmental disabilities! It’s a very broad umbrella.
It’s also about connecting with each other, empowering ourselves and one another. It’s about listening to our stories. Sharing community, resources, pain, love and inside jokes.
And we can’t stop until our world really does become accessible.
Kari Turner is a freelance writer and disability advocate from Los Angeles. She and her husband are raising their family in California’s high desert. In her spare time, of which she’s had little since her daughters were born!, she blogs about disability, spirituality, parenting, and faith at http://writingthetao.blogspot.com. Follow her on Facebook and LinkedIn.