Muscular Dystrophy

Hi, my name is hippityroo. I've been diagnosed with Inappropriate Sinus Tachycardia, Cluster Headaches, Neuropathy, PCOS, lumbosacral transitional vertebrae (LSTV), IBS, Hashimoto's, Autism Spectrum Disorder, Bipolar Disorder, OCD, C-PTSD, and ADHD. I have a EMG/nerve test tomorrow afternoon and I'm scared out of my mind. Does anyone have any tips or advice? Maybe advice what to expect? Not knowing it driving me up the wall. Thank you in advance! We're testing for Myositis and Limb-Gurdle Muscular Dystrophy if that makes a difference on the testing?

#MightyTogether #Depression #AutismSpectrumDisorder #PTSD #ADHD #OCD #EatingDisorder #Osteoarthritis #AutonomicDysfunction #Myositis

Think about what you do best. Are you creative, a musician? Do you cook well? Were you a star athlete in high school, and do you still try to stay in shape? Maybe you are very cerebral and well-studied. You are humble enough to know you have weaknesses, but see your strength as your contribution to the world. Something you can fall back on and say you are good at, even in the face of other challenges you may face in life.

Imagine a world in which not only are you not recognized for your strengths, but your strengths are actually seen as weaknesses. Ever since you were a kid, people assumed your strength was a weakness, and you know that there will always be people who make that assumption until the day that you die, no matter how hard you work at your strength or how many accolades you receive.

There is a widespread misconception that most people with physical disabilities also have intellectual disabilities. Statistics show that this is not the case. Common physical disabilities include cerebral palsy, spina bifida, and muscular dystrophy. Around 50-70% of people with cerebral palsy do not have any intellectual or learning disabilities, according to the www.ninds.nih.gov/health-information/disorders/cerebral-palsy and www.cerebralpalsy.org/information/cognition Estimates show that around 70% of people with muscular dystrophy do not have any intellectual or learning disabilities, according to the www.mda.org/quest/article/when-neuromuscular-disease-affects-the-brain. According to the www.nichd.nih.gov/health/topics/spinabifida/conditioninfo/di..., 80% of people with spina bifida do not have any intellectual or learning disabilities. These statistics do not include many other forms of physical disability, including, but not limited to, physical disability as a result of chronic illness or injury.

The truth is that not only do most people with physical disabilities not have intellectual disabilities, but many of us have above-average intelligence. Like a blind person with strong hearing or a deaf person who can see well, people with physical disabilities often use their intelligence to compensate for their weaknesses.

As a child, I was not playing on sports teams or dancing in recitals. I was reading, working on homework, and trying to win academic awards. It’s what I knew I could do well, and gosh darn, I was going to excel at it. For most of my academic career, I was not in special education classrooms. I was in Honors classrooms.

This is not to say people with physical disabilities are better than those with intellectual disabilities or that intellectual disability is a valid reason to treat someone poorly. Every person-whether physically disabled, intellectually disabled, or both, deserves to be recognized for their strengths and accommodated for their weaknesses. (According to the www.psychiatry.org/patients-families/intellectual-disability..., 85% of those with intellectual disabilities only have a mild intellectual disability. Also, even those with severe intellectual disabilities have value as human beings.)

This is about the many times I’ve overheard people whisper in shock, “Jen’s actually smart.” This is about people speaking more slowly or over-explaining things to my friends and me. This is about employers making pre-judgements about candidates with visible disabilities. This is about how many accessible recreational activities, social activities, and even church programs for people with disabilities are geared toward those with intellectual disabilities or even children. (At times, the leaders of such programs assume grown adults with physical disabilities need their parent’s permission to participate.)

This is about the strengths of people with physical disabilities being mistaken for our weaknesses.

Part 1 of 2 Warning: Contains Spoilers and also contains references to end of life battles and withdrawal of care

I recently watched the (2023) British drama, Best Interests, about the fictionalized saga of one family’s battle over medical care—and the state’s right to decide to withdrawal care—for their disabled daughter. Over each episode we are introduced to the contours of each character and their position towards the continuation or withdrawal of care for 13-year old Marnie who has a form of Muscular Dystrophy and is ultimately hospitalized for a complication that requires complex interventional care. Despite the critiques I will level against the drama, I do recommend watching the series as it raises important issues around disability in society (e.g., state’s vs. parents’ rights in healthcare decisions, pandemic care-rationing, critiquing notions of normalcy in formulating notions of “quality of life,” etc.), and it also showcases the enormous talents of disabled actors (Niamh Moriarty, Matt Fraser, Lenny Rush, Kiruna Stammel, etc.). Ultimately, I think every show or film that tackles huge issues like Best Interests does is by nature reductionist because no one can cover everything in such a format no matter how talented the writers, yet this show raises incredibly important issues for the audience.

As I watched the first couple episodes of the show, a phrase I read awhile back jumped into my mind: disability perception gap. I originally confronted the phrase in “The Disability Perception Gap Policy Report” [hyperlink] published by Scope a few years ago. The authors of the report use the phrase to summarize their findings, that there is a gap between what the public perceives about disability and the reality of the disability experience, and this gap in perception perpetuates ableist culture and social structures. My critique of the show deals with the disability perception gap amongst medical professionals, which extends from and relates to the more general societal disability perception gap.

Like many people with a disability, I know from personal experience that one of the most important disability perception gaps that exist relates to medical professionals’ perceptions of disability and the quality of disabled life. The Medical Model [hyperlink], which discounts disabled lives and experiences and perceives disability as an automatically negative state, as a “tragedy,” is still the main framework that medical professionals are taught. A recent study in the U.S. demonstrates this physician disability perception gap as the researchers found that over 82% of a group of practicing physicians reported that “people with significant disability have worse quality of life than nondisabled people” and only about 40% of those physicians “were very confident in their ability to provide the same quality of care to patients with disabilities” [hyperlink]. There is, I would argue, a huge gap, a chasm, between how physicians perceive disabled lives and how people with disabilities experience and value their own lives. As mentioned in Best Interests, this particular disability perception gap, was, for example, on full display during the pandemic [hyperlink]. (I find Collin Killick’s poem, “The Quality of Life” particularly poignant on this theme. [hyperlink]) In the end, however, I would argue that the show did not go far enough in challenging this physician disability perception gap and that instead of subverting the gap, it actually reinforced it in fundamental ways.

The viewer was mostly introduced to the physician disability perception gap through the character of Marnie’s doctor, Samantha. Much was rightly done by the drama to humanize Samantha and to show that not only does she not take decisions to withdrawal care lightly, but that such decisions take a heavy toll on her. Yet, that very act of the humanization of Samantha is problematic because, I argue, it isn’t reciprocated with the corresponding humanization of her young patients. Given the gravity of the situation outlined for the audience, shouldn’t the physician’s humanity be juxtaposed more clearly with that of the children having their fate decided? But Samantha’s patients are often presented in scenes as merely objects in hospital beds and throughout the episodes the voices of such pediatric patients are virtually silent, even Marnie’s. Marnie is the fundamental object of life or death decisions, but as a character, she has no agency in those decisions (and mainly only appears through fragmented flashbacks—brief and incomplete flashes of her humanity mainly filtered through her family’s eyes). There is only fleeting exchange overall that relates to a disabled child themselves discussing end of life decisions, and that scene is filtered through the child’s mother. There is thus a trap that viewers may very well fall into wh

I am 34 years old with a PhD in Biomedical Engineering. I have MD and use a motorized wheelchair. There have been multiple issues in common with every flight I have been on. The airplane seat height was a significant challenge as I have muscle contractures and transfers are difficult, often requiring 2 to 3 people to lift me. Lavatory access was impossible and no alternatives were offered. The time required to board and for airline staff to load/unload my wheelchair in the cargo hold was also substantial.

During my time in academia, I was severely limited by distance when attending scientific research conferences. The longest distance I traveled by plane was New Mexico to Seattle on a nonstop flight with Southwest airline lasting 3 hours. Once the plane landed, the staff brought my chair to the boarding gate after what seemed like an hour of anxiously awaiting an opportunity to get to the airport bathroom. My wheelchair had to be manually pushed all the way from the bottom of the plane to my location. Keep in mind power wheelchairs can weigh 300+ pounds and cost $30,000+. Somehow my wheelchair technician back in New Mexico helped us reset the wheelchair.

On a spontaneous weekend trip to Los Angeles, I flew on a smaller United jet. Unlike the Southwest crew allowing me to load/unload directly from my wheelchair, United brought out what they termed an “aisle chair“ which looked to me like a chair for a 10 year old weighing 50 pounds. I was 21+ years old and about 200 pounds! In order to keep me secure in this tiny chair, I was strapped down head to toe which I have to admit made me extremely anxious and a bit claustrophobic (à la straight jacket). After going through this process again to exit the plane, I found out my joystick was broken off the armrest of my chair. The staff found two screws and somehow reattached the pieces. I then once again motored quickly to the nearest airport bathroom.

The bottom line from these stories (like so many others involving people who use motorized wheelchairs) is that is an exhausting and demoralizing experience. I haven’t traveled by plane since 2012 because of these issues and my disease progression. This means that I have to get someone to drive me out of state to attend any disability summit, research symposium, or visit my new nephew (a 20 hour drive!). Why do people with motorized wheelchairs have to be forced into avoiding flying altogether because they are afraid of injury or wheelchair damage? Airline companies must do better!

#MuscularDystrophy #Wheelchair #Disability

Be Your-self.

Noting is Impossible. I we decide.

I am a Wheel chaired person with Muscular Dystrophy and love making friends and nature.