Resources to live well with SMA

Neuromuscular clinics provide specialised care for neuromuscular
conditions, including SMA. Coordinated care through a
neurologist is recommended, and SMA clinics offer proactive care.

Daily life

Addressing inequality and accessibility

Addressing inequality and accessibility
Addressing inequality and accessibility
Addressing inequality and accessibility

Posted by: Ellie

“I’m tired of the incorrect perceptions of people with disabilities. For example, if I am out shopping, I still get the odd person saying, ‘Oh, you are so brave’. And I’m thinking, ‘Well, I’m just doing my shopping – not really doing anything brave!’. I understand people mean well and are probably just opening a dialogue for conversation, so I never feel angry. Instead, I feel it's my opportunity to educate others.

I have also had experience with booking a hotel room at a resort and we don’t get the option of a lake view or an ocean view. We get the bad room at the back that’s overlooking a laneway. Or with theatre seats, we get shoved over to the right side or we can’t get boxes. There are some things like that, that make us feel like we are not quite up there with everybody else.

Of course, from a physical perspective, I’ve had to always check whether locations and venues that I am attending are wheelchair accessible and this can be very draining and time consuming. There are a lot of phone calls to be made and sometimes a venue might think they will be accessible for a person in a motorised wheelchair, but, in reality, they’re not. There have been times where I have not been able to pursue something that I was really interested in because of a lack of access, and that can be really frustrating. So, it’s always good to do your research and ask questions. This includes specific questions about what you need, like: Is there a hob in the shower? How high is the lip at the entrance? Is the footpath gravel, concrete or grass? Can the person in the wheelchair sit with their company? Can the person in the wheelchair stay in their wheelchair? The more questions you can ask, the better.”

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