Muscular Dystrophy Association

@muscular-dystrophy-association | contributor
MDA is leading the fight to free individuals — and the families who love them — from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help kids and adults live longer and grow stronger by finding research breakthroughs across diseases; caring for individuals from day one; and empowering families with services and support in hometowns across America.

Don't Treat Adults With Disabilities Like Children

by Joe Akmakjian I’m a 25-year-old college graduate. I’m an adult and I can prove it. I have bills, grown-up responsibilities and the obligation to do things I don’t want to do. Still, regardless of the date of birth listed on my Colorado State ID, some people still treat me like a kid. Unfortunately, a lot of the world finds it easy to infantilize people with disabilities. This doesn’t mean that people look at me and instantly create a mental Snapchat filter that puts a pacifier in my mouth. It’s often more subtle than that. For example, there have been many times I’ve been out at a restaurant with friends my age, ready to give my order, only to be skipped over by the server who turns to another person and asks them what I’d like to eat. Hello? I’m right here! The expectation seems to be that I can’t answer for myself. When I speak up and say what I’d like for my meal – and add “And I’ll have an extra dirty martini (shaken, not stirred)” – the server’s face typically goes from ghost white to beet red all in a matter of seconds. This experience is all too common for adults in the physically disabled community. Being overlooked is frustrating, but being talked down to – especially by my peers, people younger than me or the people who work for me as caregivers – bothers me even more. I don’t expect to be called Sir or Mr. Akmakjian – in fact I hate it. But there are other ways to demonstrate respect. Here’s one way not to do it: Once, as I prepared for a trip and was finishing packing, the book I was planning to read on the plane didn’t fit in my carry-on. I suggested I would just hold the book throughout the journey. Rather than agreeing with me and moving on, a relatively new caregiver said: “Well, if you want to hold your book, you have to hold it the whole way there. Are you sure you want to do that?” It felt like he was a parent telling their kid to use the bathroom before leaving the house or hold it until the minivan stops. I was furious and considered canceling the trip and relieving him of his duties right then. Thankfully, I kept my cool and this was a one-time faux pas – with that guy. Another thing that happens far too frequently is that people seem to think it’s hilarious to give me juvenile nicknames, most of which have something to do with my wheelchair. Think Speedy Gonzales, Hot Rod and Speed Racer. Yes, they are accurate insofar as they describe how I drive my chair. But they’re also all references to children’s cartoons or toys. They don’t represent who I am – I have never liked cartoons and I am not a “car guy” – and they aren’t particularly original. Here are some things you can and should do when you meet someone with a disability: 1) Make eye contact: This is common courtesy when it comes to the art of conversation, and this doesn’t change when speaking to someone who is disabled. Well, you might ask, if that’s the case, is it OK to crouch down to chair-height when speaking to someone who uses a wheelchair? I personally believe this is perfectly acceptable, as long as you talk to me like an adult. But I don’t want to speak for everyone. My wheelchair rises up and down, so I often find that people don’t kneel to my level. But it’s never bothered me much when they do. In fact, it’s a lot easier than craning my neck to look up at them. Also, for me, this is the best way to give me a hug. I prefer hugs like this so I don’t have to say goodbye to your naval rather than you. 2) Shake our hands: I understand that not everyone is capable of giving or receiving a standard handshake, myself included. But, for me, I appreciate when someone reaches for one when meeting me – even if I can’t reach back. Just give it a try. But also understand that you’ll have to do most, if not all, of the work. My hand might slip out of your grip, not extend fully across to meet yours or not open because it’s too cold. If it ends up that you simply rest your hand on mine for a moment, that’s OK too. 3) Ask questions: If you are someone who hasn’t had much experience interacting with disabled people, you may think it is rude to ask questions of us. In fact, most of us understand that you might not know much about our diseases, abilities/disabilities or needs. I love being asked about my SMA. It means you care enough and you want to learn. But I am more than my SMA or my wheelchair. You can and should ask me the same questions you would of anyone new you meet: where I’m from, what I do, what my interests are and what I’m up to this weekend. Now that I have all this off my chest, there’s one more thing I need to make clear. I’m a practical man; therefore, I hate apologies. They don’t fix anything for me. I’m of the view that actions speak louder than words. If you find that you have committed one or more of these gauche transgressions, don’t worry. You’re not alone. You shouldn’t feel bad. I think most people mean well and if they are guilty of anything it’s that they haven’t spent enough time with people like me. So I’m not looking for a heartfelt apology letter stained with the tears of your remorse. All I ask is that you try, with all of your might, to stop talking to me and other disabled people like kids. Joe, 25, is a native of Fort Collins, Colo. He lives independently but has strong ties to his family. Joe was diagnosed with spinal muscular atrophy (SMA type 2) when he was 15 months old. SMA is a progressive, potentially life-threatening disease affecting the nervous system and causing muscle weakness in different parts of the body. SMA can affect abilities many of us take for granted, such as walking and hugging. It can cause serious problems with breathing and swallowing as well as weakness in back muscles that can lead to progressive spinal curvature. Joe has used a power wheelchair since he was 3 years old. This story originally appeared on the Muscular Dystrophy Association blog. Continue reading this story...

Receiving an ALS Diagnosis: A Photo Story

Ray Spooner, a certified nurse midwife, who has ushered thousands of babies into the world, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) just a few months after dousing himself in the Ice Bucket Challenge of Summer 2014. An avid cyclist and fitness enthusiast, Ray knew he had little time before his physical capabilities would be taken from him. Shortly after his diagnosis, he made a bold decision to take a bike trip (which Ray affectionately referred to as “A Little Ride”) from America’s west coast to the east  to raise funds to support MDA research and services for people with ALS. Ray lives in Urbana, IL with his wife of 33 years Rae. Together, they collaborated on the following photo essay documenting their daily lives as Ray’s disease progresses. The following 18 photographs are just a fraction of the hundreds of shots photographer Justine Bursoni has taken over the last two months. They show a life, a marriage, a family and — of course — love. “Fairly early on after I was diagnosed, a friend texted and advised that I not look up pictures online of people with ALS,” Ray said. “It was of course too late by then. Today, I no longer have to look on the internet for pictures of what ALS can do; I just have to look in the mirror. If I could, I would be taking photos myself but I can’t hold a camera anymore. Periodically, I will ask my wife Rae to take the odd photo but never to the extent I would if I could myself. Then as chance would have it, I was contacted by someone I’d helped take care of during pregnancy who had an intriguing proposition. Justine Bursoni is a professional photographer and wondered if I would be willing to let her document moments of our everyday life as our ALS journey unfolds — through to the very end and beyond — ultimately embarking on a process of tracing my own mortality. I didn’t have a second’s hesitation. Sometimes Justine will come over and be a fly on the wall documenting our daily activities. Sometimes I will ask for a specific shot that I can’t take myself. And sometimes the whole endeavor is put on hold when our grandson Jack sits in her lap with a book. (It’s hard to explain to a 21-month-old that the woman with the camera isn’t really there.)” The very first photo Justine took of Ray waking up and being readied by Rae for the day, April 2016.   An ALS diagnosis can initially lead to such a sense of isolation. Here, Ray sits with his eyes closed in the living room.   Rae feeding Ray. “A romantic breakfast for two,” Ray jokes.   Grandson Jack sits on Ray’s lap and listens to a story. Rae, with family dog Eddie says, “Family is the best medicine.”   Ray and his son Manu program an eye-gaze computer that will helps Ray communicate. Manu’s technological assistance allows him to be a part of Ray’s care.   Ray’s hands texting. The once-strong hands that delivered 2095 babies, held the handlebars of a bicycle for thousands of miles and created so many beautiful things have been reduced to one finger, with which Ray uses to communicate.   Ray teaches daughter Lisa the Haggadah so she can lead the Seder.   Ray, who grew up in London, loves a proper “cuppa.” Here, his mother Jeanne, visiting from Hertfordshire, helps him drink tea. Ray says, “Keep calm and call Mum.”   Rae and Ray stand in front of a mirror. Ray calls his reflection a “stranger in the mirror.”   Ray and Rae stand in the garden outside their home. “Early on, we promised to laugh every day,” says Rae. Ray says he’s “smiling every day. Crookedly but smiling, nonetheless.”   Ray continues to pursue his love of cycling. Here, Rae and Eddie help Ray into his trike “of comfort and freedom,” Rae adds.   Ray on his trike from afar on the horizon. Ray says, “Riding the trike lets me forget I have ALS. [I feel] free.”   Ray pedals his trike next to a giant tractor. Ray says, “[I rode] 31 miles last Tuesday. Not my usual 100, but ALS has given me the time to absorb my surroundings.”   Ray and Rae bike together down Race Street at sunset.   Although he used to be a provider at the hospital, Ray is now a patient at Carle Foundation Hospital in Urbana, IL, where his local MDA Care Center is located. Here he takes a pulmonary function test.   Ray and Rae walk down the stairs of their home, hand in hand.   Now that Ray has lost his ability to speak, he communicates via text messages on his phone. Ray wears a BiPAP mask, which aids his breathing at night, and “text[s] sweet nothings before bedtime.”   The Spooners pose in front of Champaign Surplus with a check for MDA. “When Rae and I sat down to discuss a goal for our MDA fund raiser, we thought $10,000 sounded an attainable amount. Last week we achieved more than we ever thought imaginable, $80,000.” This post originally appeared here on the Muscular Dystrophy Association (MDA) website. The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.