One Small Voice

Hello and welcome back! As always, I appreciate your support. If you are new here welcome, we meet here each week! This would probably be a good time to reintroduce myself for anyone new here, especially given the topic I want to cover this week. My name is Amy and I live with a lifelong disability called Bethlem Myopathy, which is a form of Muscular Dystrophy. It causes my muscles to be weak, and is slowly progressive making walking and everyday tasks increasingly difficult. So, over time, my muscles become weaker and if affects my joints as well, causing stiffness, which also worsens with time. I do my best to live life to the best of my ability. I am a wife and a mom of two teenage sons. I also love a good challenge, and in recent years have become interested in adaptive sports. I am a water lover and exercising in the water is a staple in my life.

Currently, I am serving with the Muscular Dystrophy Association as their National Ambassador! I love my role which is to raise awareness, and share my life experiences as someone who has never known life without a disability. I am developing a humble pride surrounding my disability that has been a long time coming. When I was asked recently to blog about disability pride month, I said “of course, that’s right up my alley!”

It seems these days there is a designated day or month for just about everything, right?! So much so, that I think we just tend to gloss over and scroll on, thinking oh  just another national awareness day/month for something else. I have to admit, I’m often guilty of doing the same. I mean clearly I’m not going to celebrate national ice cream day as someone allergic to dairy! 😉 Some of these days/ months, obviously have a deeper meaning than ice cream. But seriously, when I think about all of the stories I have read and listened to surrounding disability pride month, I feel like I want everyone to stop and listen! If it doesn’t directly affect you, chances are you know someone who lives with a disability. I think some of these days and months exist because people are desperate to be heard and seen. Often times it’s because they are struggling or hurting, and it feels like they are alone in their struggle. They want to be understood. They want a sense of belonging that is so often missing. They want change.

With all of that being said, if you are so kind to be taking the time to read this, I’d like to share what disability pride month means to me. First of all, it means that we are eager to educate and raise awareness surrounding disabilities. Did you know July is disability pride month because the Americans with Disabilities Act (ADA) was signed in July of 1990? The Americans with Disabilities Act (ADA) became law in 1990. The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public Definitely something to celebrate! I was 16 years old then, and I remember it. It was a huge step forward, even though so many changes still need to be made. 

Did you know that many people who live with disabilities often live with conflicting thoughts? Thoughts of wanting to embrace their disability because it’s as much a part of them as someone who has brown hair is a part of them. But, at the same time, it can also be this thing you loathe and desperately want a way out because it makes life so difficult, and often leaves us feeling excluded from normal, everyday activities of society. For me, those thoughts take turns in my mind, each begging to be heard. Neither is right or wrong, just real. 

It’s easy to be going about my day thinking, yep, I’ve arrived! I’ve got this disability under control! The tables have turned! I’ve found my routine, my groove, and then BAM! An obstacle not foreseen. What do you mean the only bathroom is on the second floor and there is no elevator? Or how about, we don’t have any accessible rooms available, sorry! Oh, so you don’t have a ramp to get into the building? Where is the button to open this heavy door to the restroom so I can drive my scooter in? Am I supposed to simultaneously hold the door open while driving my scooter in, maneuvering that while onlookers just stare like I’m a side show at a circus? (By the way yes, I can do that, I’ve had a lot of forced practice!) So often sidelined, even in this day and age, when we should NOT still be discussing basic accessibility needs. And air travel? Well, that continues to be a nightmare for those traveling with disabilities. 

If you’ve read previous blog posts, then this probably all sounds repetitive. That’s because it is. Still, we are fighting. We have the same basic wants, needs and desires as any other human being. Those things aren’t just erased when you are disabled. It still hurts just the same to know you will be left out of something. Excluded. Disabled or not, we’ve all felt that. Imagine feeling that regularly. Not included, just because you are you. 

I point it out often, but being disabled isn’t only decided at birth. Anyone can become disabled at any time for various reasons. That is why I’m passionate about encouraging others to learn and to help us magnify our voices for change to happen. That we wouldn’t be seen as an after thought, or someone to just be plopped at the end of an aisle due to lack of other options. Helping to find ways to include us, so things are seamless, and we don’t have anxiety every time we venture out to a new place, or fear we will ruin everything for the group if things aren’t accessible. Or, not unwantedly causing a scene to get a basic need met.

Look around when you go out. Just become aware and notice things that may need change. If you see something, say something. If you work somewhere and notice a need for a change for more accessibility, speak up! 

It takes humble courage to wear my disability as a badge of honor. It is what I strive for. I strive for equality, inclusion and using my small voice to be part of a big change. Together, shared collectively, our voices become louder. At the end of July, our fight will continue. Without the platform of National Disability Pride month, those same voices, desperate to be heard, will keep pleading for change. One small change at a time, we are making a difference. Won’t you join us? 💚