Educating Everyone with SMA
Providing education on accessibility needs is so crucial in today’s world, where about 15% of the global population is living with a disability. Inclusion and accessibility is important, because everyone deserves a fair chance at life and should be given the same experiences no matter what their abilities. I also want to remind everyone that a disability is not necessarily something you are born with. It can be something that may affect you later in life and at any time.
It is so important that we teach our children about different abilities. Just because another person has different abilities does not make them any less of a person. There is no such thing as “normal” because every single one of us is different and unique at the same time. Whether it be the colour of our skin, the way we communicate, if we are shorter or taller, whether we use our legs, or if we have to use a device such as a walker, crutch or wheelchair. We can also be different in the way we eat. Do you eat using your mouth or through a feeding tube (G-tube)? Maybe you require oxygen, a tracheotomy or a continuous positive airway pressure (CPAP) machine to breathe. There are so many things that can make an individual different, I cannot possibly touch on all of them. The same goes for people living with a condition that impacts their accessibility needs.
I have been fortunate to not have had too many experiences where I wish someone had more education on differing abilities. However, I do have a few experiences. When we take my son Kaysen, who has spinal muscular atrophy (SMA), to the park, the kids really want to push him around in his wheelchair. This would be awesome if they asked him beforehand and Kaysen agreed to it, however no one should just go up to a child in a wheelchair and start pushing them. A couple of times people have wanted to take Kaysen's picture because he is the youngest child they have ever seen using a wheelchair.
One of the more common things we encounter is in regards to the comments we receive from adults about Kaysen. When we were out grocery shopping, we used to use a supportive seat in the shopping carts as Kaysen could not otherwise sit independently. We have received comments such as, “Oh, the luxuries for today’s parents”, as they did not know or realize it was a medical device used for supported sitting. Kaysen was also lucky enough to be gifted a Power Wheels jeep by a non-profit organization to assist with his mobility when he was outside. We always use his jeep when we go for walks as Kaysen has difficulty with terrain and distance in his manual wheelchair. When we have been out and about with our family on our walks, we have had people make comments about how nice it must be for Kaysen to not have to walk. I understand that people are not always aware, but I also think people should not just assume it’s a toy when in reality it is his mobility device.
Every single person needs to be educated on accessibility needs and differences – especially because some are not always visible. Ultimately, I think it has to start with adults, as they are the ones who are going to teach our children. Not only schools, but society in general plays such an important role in educating children about disabilities. We need to do better as a society to shift perceptions and stereotypes about those living with a disability. It is so critical in order to help create diversity and inclusion in our world.
SMA is an evolving rare disease. While there were few treatment options not that long ago, there are now not only one but three treatments available! There is also newborn screening available in some provinces, including my home province of Alberta, which can help diagnose conditions like SMA early on. I honestly wish that medical professionals knew more about how much SMA has changed as a rare disease. I feel like only some medical professionals are used to our children passing at such an early age and are not aware of the new treatments and how much the disease has evolved.
My family’s hope for the future is for our world to be more inclusive, and to act with compassion and understanding when faced with others who may look different from one another. It is our hope that more people will not only want to educate themselves but also their children on people with different abilities. Just because a person has a disability does not make them any less deserving of all life experiences – this world is meant for everyone!