In my last blog I talked about preparing for a writing conference. Now, I’ve come back from that writing conference which was centered on the idea of using writing to change the world. While I enjoyed the conference and will probably share insights I learned in coming weeks, I realize that being able to go to the conference took a lot of effort to overcome the issues my disability provided. I ended up making choices multiple times between taking part with everyone else and taking care of my health. Because of that, I wanted to cover ways we can overcome the barriers our disability creates so we can take part in more things that matter to us.
Be Upfront With Your Needs
Understanding and being honest about your needs is important when you are doing things outside of your normal routine. For me, I can walk but I recognized I would need a wheelchair to help me get around and be safe if I had a seizure. I also had to admit that pushing myself harder would likely mean I needed to have caffeine in case my mental energy dipped too low along with snacks if my blood sugar dipped. When you are honest with yourself about what you need, you can bring the things you need and leave behind the things you don’t need.
Another aspect of this is balancing perceived expectations around what you really need. I felt like I needed business casual clothes for the conference. As a person who writes at home alone most of the time, I worried I wouldn’t have enough nice clothes. As I prepared, I found out that it was common for tee shirts and yoga pants to be worn at these conferences because we all get that we are a bunch of writers. While there was still an event to dress up for, I took the pressure off because I could examine the expectation and realize that I didn’t need to fuss about clothing. That is what being upfront with your needs is about, determining what you actually need and dispelling beliefs about things you need to be or have that don’t line up with reality.
Be As Prepared As Possible
After being upfront with my needs and beliefs about the conference, I could decide what I would need for the conference. In our own lives, even at home, we want to have the tools we need so they are available to us when we need them. At the conference I had a moment where my mental energy dipped low enough to threaten a seizure. I cursed myself as I had left the caffeine in the hotel room instead of bringing some in my bag. I remember missing out on things I wanted to experience because I didn’t have what I needed to take care of myself right away and I needed to recover from the dip for longer than if I had been prepared.
We want to do the same thing when we are trying to push past our barriers. We want the tools to be available to us easily and remove as much delay in getting what we need.
Be Flexible and Compassionate With Yourself
Carrying on from the last point, when you are working with your barriers and pushing yourself outside of your comfort zone, you need to be flexible when you can’t do as much as you hoped and be kind to yourself despite your disappointment telling you that you screwed up. As much as I hated I needed to recover, I reminded myself that being okay was more important than missing a panel. This compassion can be hard especially when we feel like we let others down by respecting our needs and limits. Being compassionate with yourself is vital because when you aren’t compassionate with yourself, you add guilt and shame to everything else you are already dealing with. That guilt and shame then adds to the toll you take and makes it harder to bounce back.
Complain When Necessary
One thing I’ve learned about existing in an abled-bodied world with my disability is that sometimes things are inaccessible because no one pointed out that the idea is inaccessible. In programming, there is a term called an edge case that people who help debug the programs look for before the software or program become available to everyone. These edge cases are the unexpected ways that users may use the product that don’t come to the developer naturally.
The World Health Organization estimates that 15% of the population or 1 out of every 6 people experiences a disability. If you live in America like I do, the CDC puts that number closer to 26% or 1 out of every 4 people. It doesn’t feel like the numbers are so high because often we are excluded because of inaccessibility. Until the 1970s in America, there were ugly laws which criminalized disabled people existing in public. Add onto it people who prioritize their comfort over other people having access that is incredibly common and you get to where we are where places forget to include disabled people unless we complain.
I have thankfully met positive responses with this writing conference about most of my complaints. At this conference, my business partner and I were together a lot as she provided me help. This business partner is allergic to gluten products and for breakfast their big gluten-free draw was the oatmeal. However, when we went to get our food, the oatmeal was labeled as gluten oats. My business partner was afraid to bring it up but we let someone we know had power to change things know about it and instead of being mad, that person was fired up to help us. The misstep with the food could be handled, and they fixed it not just for my partner but for every other person who had a gluten allergy at the conference. Complaining isn’t just selfishly wanting things to be better, complaining is often a valuable tool to advocate for ourselves and others.
Don’t Shy Away From Tools That Can Help
One of the most frustrating things I see in my support groups is not feeling disabled enough to use an assistive device. I see people struggle to walk who want to try a cane but fear that they aren’t disabled enough to have one. While it is important to understand the risks that can be involved with any tool and understand how to use them properly, giving yourself permission to use assistive devices that help your life allows you to have more independence and enjoyment in life than waiting until you feel disabled enough. Reading audiobooks counts the same as reading a book. Using a cane properly can unlock the ability to do more despite your difficulties. Learn about the assistive devices that exist and use the ones that help you get more out of the world. While injury can occur with misusing certain assistive devices, those injuries can often be prevented by learning to use the device properly. That is the biggest risk to understand before you give yourself permission to use tools but we often deny ourselves the benefits of such devices because we don’t feel disabled enough or we worry that using them is giving up.
Ask For Help
The last important point to overcoming some of your limits with your disability is being willing to ask for help. We often think it makes us weak to ask for help but in reality asking for help makes it easier to connect with our needs. The people we want in our lives will help when they have the resources and may ask for our help in return. Being human is about being a part of a community and giving and receiving help is a large part of how communities are built. Don’t be afraid to ask for the help you need and the doors that unlocks may surprise you.
Which of these is hardest to keep in mind when you want to do more with your life? Did reading this give you ideas of how to deal with this? Let me know your thoughts and answers in the comments.