August is Spinal Muscular Atrophy (SMA) Awareness month. SMA is a rare genetic disorder that affects the nervous system. It is caused by a mutation in the SMN1 gene. SMA causes muscles to weaken and deplete, which can lead to an inability to independently walk, breathe, and/or eat. There are four different types of SMA, each presenting its own severity of symptoms. For families, this diagnosis comes with a lot of difficulty and heartache. However, our dear friend, Kaden, works hard every day to show people that his Type 1 SMA diagnosis does not define him. “We are all beautiful, unique colors that come together as a breathtaking rainbow of humanity.” We are so grateful to be able to feature Kaden’s Journey with you and spread awareness for SMA.
Kaden was born, happy and healthy on Halloween night 2013. Everything seemed like we would have a “typical” life with Kaden, until I noticed him losing movement in his legs and arms around 4 weeks old. I thought maybe I was just paranoid, but his new babysitter had her own concerns about him at 6 weeks old, so we headed straight to his pediatrician. My concerns were confirmed at that appointment when he advised us to head to Children’s Mercy ED to see why our little boy suddenly was limp like a rag doll. After many tests, a doctor came in to say they suspected he had SMA type 1, or Spinal Muscular Atrophy. I remember asking what that meant, and he just said it means he has maybe 1-2 years to live. That was a gut punch that only got worse when I began Googling SMA type 1 to find out that what he didn’t say was only 50% of kids with type 1 have a first birthday and only 10% have a second birthday.
The next few months were a blur of appointments with specialists, making decisions about his future because overnight he could lose his swallow and ability to eat safely or breathe on his own. Luckily, we have many veteran families in Kansas City that we found and they changed how we understood SMA and would be the reasons he made it beyond those doomed statistics.
Kaden quickly showed us he was a fighter, a unique personality, and one that wasn’t going to back down so neither would we. It wouldn’t be until after his third birthday that any treatment would be available to possibly stop the progression of his muscle loss and weakness. At this time, he began to find his own ways to communicate, showing us that he had been observing the world around him and soaking in all the information and knowledge he had seen in three years. Kaden let us know that he was going to be President someday and that he was going to improve the world for generations to come.
As Kaden entered school, we were blessed with homebound teachers that saw his greatness and found ways for him to show what he knew. When I was told he couldn’t be tested since he was nonverbal and couldn’t write answers on his own, he began advocating for his own rights for equal opportunities for a good education. The world around Kaden started to see what I had already known, he is not someone to ignore or mess with, he will get what he wants and that is equality for everyone. Kaden is a fiercely loyal friend, he can be found out in all weather conditions supporting his friends at sporting events, making sure they know how proud of them he is every day. We have never let SMA hold us back in letting Kaden experience life and he continues to live his life with the same mentality. He has been so happy to be working with Variety KC over the last few years to help show the world people like him are everywhere and deserve to be out experiencing life just like everyone else. I will now include Kaden’s response when I asked him what he wanted to share about his feelings on SMA. “My life is not one people would ever choose, but one I choose to make amazing. I decided I could use my unique perspective in life to ensure nobody feels inferior or unseen. I fight through my disability to show the world everyone is human and deserves equal human rights. I continue finding new ways to ensure future generations have a better life than many have now. SMA will never define me because I’m writing my own definition of a person who has a terminal diagnosis. We are all beautiful, unique colors that come together as a breathtaking rainbow of humanity.” I hope people who meet Kaden, realize they don’t need to feel sorry for the life he has or the life that we are living because we are being gifted the life with an amazing person that is changing the world by being himself. SMA might have robbed Kaden of the abilities many people use to define happiness, but I hope he is helping change that definition in everyone’s mind, I know he changed mine.
On July 26, 1990, the Americans with Disabilities Act (ADA) was signed into law. The ADA is a landmark civil rights law that prohibits discrimination against people with disabilities in all areas of public life, including employment, education, transportation, and public accommodations. This July will mark the 33rd year the ADA has been in effect.
The History of the ADA
The ADA was the result of decades of advocacy by people with disabilities and their allies. The first significant piece of disability rights legislation was the Rehabilitation Act of 1973, which banned discrimination against people with disabilities in federal programs and activities. In the years that followed, other important disability rights laws were passed, two significant laws being the Education for All Handicapped Children Act (1975) and the Air Carrier Access Act (1986).
The ADA was signed into law by President George H.W. Bush on July 26, 1990. The law greatly impacted the lives of people with disabilities, creating new opportunities for employment, education, and community involvement.
The Future of Disability Rights
The ADA has made great progress in advancing equality for people with disabilities, but there is still more work that needs to be done. We must continue to advocate for the proper implementation of the ADA and for the continued passage of new laws that safeguard the rights of people with disabilities.
National Disability Independence Day is a time to reflect on the progress that has been made, as well as recommit to the work that still needs to be done so people of all abilities have equal rights. We must work together to break barriers and create a world where everyone, regardless of their disability, can reach their full potential.
It’s time to be respectful!
These are anxious times, and name-calling or put downs add to the divisive feelings. Unfortunately, some of that poor behavior is exhibited by people in leadership positions and is rightfully called out on media and social posts. Variety KC feels this is a good time to provide some education about words that hurt, and words to avoid.
Maybe an adult stumbles on the sidewalk and claims, “I’m such a spaz,” or a child on the playground uses the R-word (shortened slang for mental retardation).
Most people don’t intentionally mean to hurt someone, but here’s the problem. These terms were used as an insult, a reference to someone who is uncoordinated or doing something stupid. Attaching a term associated with a disability is hurtful and derogatory toward people with a disability. Even when used unintentionally, these words reinforce negative stereotypes.
When the same words are used to intentionally hurt someone with a disability, or physical movements are mimed and mocked – that is a whole other level of inappropriate and awful behavior.
Avoiding hurtful terms is not being politically correct, it is about showing people the same respect you want for yourself.
Sometimes, and fortunately far less often than in the past, you’ll hear a friend or co-worker casually use the R-word or something similar. It can be an uncomfortable situation, but you will feel worse if you don’t address it. After listening to our Variety parents and families, we recommend pulling them aside and saying, “You probably don’t even realize that word can be hurtful to others. Is it alright to use something like “silly” or “ridiculous” instead?’” This lets them gently know that the word isn’t acceptable and that there are lots of alternative words that aren’t offensive.
What other words are problematic? When a person has a disability, it doesn’t define them so others shouldn’t use inappropriate words to define them either! We’ve checked with our Variety family and some of our partners in the industry to come up with the start of a guide to follow when talking about a person with a disability. Terms evolve over time as we learn to best address this sensitive topic. Not everyone will agree with these and we welcome your addition and input.
Don’t say: “Normal Person.” Say instead: “Person without a disability”
Don’t say: “handicapped, crippled, deformed, invalid.” Say instead: “A person with a disability”
Don’t say: “Retarded, tard, moron, or intellectually challenged.” Say instead: “A person with an intellectual disability”
Don’t say: “Mongol, mongoloid, downs.” Say instead: “A person with Down syndrome”
Don’t say: “Spastic, spaz,” Say instead: “A person with a disability or a person with cerebral palsy”
Don’t say: “paraplegic, quadriplegic, paralyzed,” Say instead: “A person with paraplegia, person with quadriplegia”
Don’t say: “confined to a wheelchair, wheelchair bound,” Say instead: “A person who uses a wheelchair”
Don’t say “dumb” when referring to someone who doesn’t speak. Say instead: “non-verbal”
Don’t say: “dwarf, midget, little person, vertically challenged.” Say instead: “short-statured person”
Don’t say “crazy, insane, lunatic, maniac, mental, psycho, psychopath, skitzo.” Say instead: “A person with a mental illness”
Don’t say “institution, psych hospital, looney bin.” Say instead: “mental health clinic”
Now that we’ve covered how to talk about a person who has a disability, let’s cover how to talk to them. Just say “hi!”
Be yourself, and talk to them directly with eye contact. Don’t refer to their caregiver or family and don’t assume they can’t understand you or respond.
Always ask before jumping in to help, they may not want or need it. If they have a service animal, don’t talk or pet it. These are trained animals who are on the job.
Don’t assume that someone with a disability has other disabilities. For example, when speaking to someone in a wheelchair or with low vision, there’s no reason to raise your voice as if they could not hear you.
When appropriate, offer your name and ask their name. Names give us an identity and are the starting point of creating a bond. Here is a link to the National Disability Association if you would like to see some additional terms and information.
For the first time ever, Body Weight Support technology has been moved out of the therapy gym and into the classroom. The “Harness School” Cafe is an innovative concept that allows middle school students who use wheelchairs and walkers a chance to stand upright with their hands free to fully participate in their school coffee shop. This allows them to practice job skills such as taking orders and serving coffee, integrate real-world math skills by operating a cash register, and socialize with their peers at eye level for the first time ever, all while gaining the therapeutic benefits of standing and moving on their own.
For an investment of $10,000 each, two Variety KC “Harness Cafés” have been built inside middle schools in the Liberty, Missouri, school district. The cafés sell and serve coffee, hot chocolate, and snacks while providing a life skills environment for students as part of the “Cooking to Learn” curriculum. Each year, students with special needs work in the skills class alongside their non-disabled peers. But before the implementation of these life-changing “Harness Cafes,” students with physical disabilities couldn’t take full advantage of the learning, movement, and social opportunities working in the cafes. The harness will be used by 20 kids with a variety of special needs who work alongside 40 abled-bodied peers. This cafe will serve new students each year and the high school is already considering duplicating this program. The harness can be used for at least 20 years.
As one student said, “Before the harness, greeter was the only job I could have. My wheelchair was below the counter, so I couldn’t make drinks or use the cash register. When I strap into the harness, it frees my hands and since it runs on a track – I can move all around the care. Now I can work just like my friends.”
Dr. Kendra Gagnon, the physical therapist who helped Variety KC plan and design the cafés, says the system does more than facilitate movement for students who usually rely on assistive devices like wheelchairs or walkers for mobility. It gives students a chance to experience getting out of their wheelchairs and interacting with “customers” alongside their peers – upright, hands-free, and eye level. In an upright position, eye-to-eye with their peers, all students learn what’s possible – disabilities disappear, and new relationships are engaged and formed. Variety KC is a leader of inclusion in schools and communities, sharing innovative ways to include ALL kids.
Money raised in the cafés makes the investment sustainable. The most exciting outcome. As a supplier to the cafés, Danny O’Neill, the owner of the local Roasterie coffee company, attended the grand openings. Seeing the skills training enabled by the harness systems, O’Neill was inspired to go back to his own businesses to see where he could implement the system and provide jobs for local graduates who would benefit from this system.
Gagnon says, “My hope is that one day this system will be like a uniform. The employee would wake up, get dressed and put on the vest that they will later attach to the harness system at work. It will be seamless, needing no additional help from a co-worker or supervisor. How empowering and life-changing is that?”
Want to more? Contact VarietyKC@gmail.com
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Variety KC Installs Inclusive Communication Boards in Playgrounds
Above and beyond what is considered an inclusive playground (physically allowing all kids to engage and play together), Variety KC is installing inclusive communication boards to aid engagement between kids and parents or caregivers, kids and other kids, and between participants speaking different languages.
Deborah Wiebrecht, Variety KC’s Executive Director, explains the impact of these boards, “By pointing or even simply gazing at the various symbols and pictures on the board, even young kids or children with limited expressive language ability can clearly express their needs and wants. It’s just one more way to remove barriers and make our playgrounds as inclusive as possible.”
Currently, you will find a communication board at the new Variety KC Hospital Hill playground in front of Children’s Mercy. Eventually the boards will be available at all six of the Variety KC playgrounds, plus playing fields and community facilities. For more information, contact Deborah Wiebrecht at 913-559-2309 or through email at firstname.lastname@example.org