Overcoming Obstacles
What has been the biggest obstacle that you have overcome with SMA? What was your greatest challenge and how did you get through it?
Being pregnant as a disabled person
The biggest obstacle I have had to overcome as someone with SMA, at this point in my life, would have been pregnancy. Pregnancy is hard on a body. My pregnancy as a disabled individual required special planning, the ability to confront unique problems, and a lot of assistance from others. Having had to navigate many inaccessible areas of life set me up for success even though it was difficult. Ableist views have conditioned disabled individuals to not feel worthy or capable in many areas of life but especially in regards to parenting. I’m here to say it is possible and you are worthy of whatever you want in your life.
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View all responsesAdvocating against ableism
Health Leader Kellie Cusack writes:
The biggest obstacle for me with SMA has been fighting for change and advocating for the community everyday. It's an obstacle to me because of the unfortunate ableism that still happens in society. I got through this through one of my SMA friends who hosted a group with women with SMA this past January. We discussed how we can change the ableism and how we can overall make change for the disability community. The main advice she had said was to “message those in your state and work your way up. A no will become a yes eventually!”
This or That
Have you ever fought for change and advocated for the SMA community
Tailoring their home for better accessibility and comfort
Getting creative: lack of assistive equipment
One community member offers this suggestion, "If you want to increase the height of your furniture or bed to easily sit down and get up. Cut some high density styrofoam in 5 inch by 5 inch squares. Then stack them and wrap them in cellophane so they do not come undone. Then finally place them under the furnitures legs to increase its height. It is cheap, easily available and gets the job done." Join the Discussion.
Bathroom hacks to make everyday life easier
"Self-care is important but sometimes it is near impossible if you are disabled and don’t have access. Able-bodied people take for granted every day the ability to just jump in the bath or shower and have clean running water pouring over their heads and into a drain. I want to describe the way I took a “shower” for 6 months of my life." Read the full article: The Evolution of Adaptive Showering Equipment by Allie Williams, Health Leader
Accessibility begins at home
"I have been house shopping. There is a better chance of winning the lottery than finding the perfect home that is 100% accessible to meet my needs. The trick is to start with a list. I have made a list of what is important to me." Read the full article: What Is An Accessible Home by Mike Noon, Health Leader.
Other obstacles to overcome
Our health leaders have often written about the obstacles they've overcome. Here are some of their articles:
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