Every day for “Disability Pride Month” – I am committed to writing pieces that reflect the diversity, truths, and reality of our disabled community If you want to share your piece with me or be interviewed this month, I would love to share your voice! Please email me at: submissions@thegirlinthepinkwheelchair.com

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When you’re disabled, you think about inaccessibility. A lot. If your disability requires a mobility aid (like mine does – for example), your life is dependent on accessibility to live. Disabled people are continually reminded that this world was not designed for their needs. 

If you want a reminder that it was not designed for us, take a look around at in your  current city’s ramps and critically look at their designs. Majority of them are not accessible for most wheelchair users. Or walk around and see how many buildings actually have ramps or disabled access. You’d be surprised how many times that a building doesn’t need to have a ramp.

Except ramps are just what most people equate to accessibility. Not all disabilities require ramps. Not all disabilities require mobility aids either.

Day to-day, I live with reminders that this world is lacking basic access for disabled people to live their lives. Some days, I get angry because it’s not just affecting me. It’s having an effect on all disabled people. Occasionally, I get sad, too, even if I don’t like acknowledging that. It’s a mixture of so many emotions. Truthfully, I try to separate myself from the flux of emotional stressors. Except in all honesty, I can’t separate myself on how inaccessibility affects my emotional and physical life. 

We don’t talk enough about inaccessibility. We don’t talk about the serious impacts and effects that inaccessibility has on us. 

 I’m not talking about the kind of inaccessibility that the able-bodied community may imagine such as needing more handicapped parking or lack of ramps. While those issues do matter (and should matter): these are just basic facets of our existence. I’m talking about the fact that ramps are usually too high to push up, wheelchair vans cost too much, and PCA (personal care assistant) services are often cut or not covered by insurance.

I have missed major moments of the lives of people who I love because I haven’t been able to get into the venue. It means that I have to tell friends that I can’t go to that fun place with them. That place (which does seem cool) is not accessible. I can tell you, however, that it does not feel very cool to say that or miss out on the event. This is what I what I think of when I think of inaccessibility. 

Inaccessibility is not just physical barriers. It’s emotional barriers too of living your life as a person with a disability.

It’s hoping that you don’t pee yourself because the restaurant’s handicapped stall is not functioning, so you start counting. It’s crying because you missed another family event. It’s emotionally draining. It’s battling humiliation or rage. It even means that someone has even told me outright, “I think you are, like, really nice, but I don’t think that we should hangout since you use a chair. I don’t know how to handle all of it, you know?” – directly quoting my journal entry 

The positive was that this person immediately let me know that she was less than stellar. I was hurt because she found the idea of cancelling plans to be easier than working out plans that were accessible. The idea of staying away from a disabled person was easier than finding ways to make my life as a disabled person easier.

Able-bodied people have no idea what disabled people go through to live their lives in a functional way. Disabled people have so much responsibility on their weary shoulders. Imagine if able-bodied people had to work out everything including bathroom trips — even for a day? This is the life of a person with a disability. We have no choice, but to make sure our lives are accessible. Everything is always planned out. I don’t go to a doctor’s office without calling to ask if they’re wheelchair accessible.  

I plan everything out. I don’t have a choice.  

There is a running joke about disabled people’s bathroom breaks too. We’re calculated people. In a world like this, we have to find a way to make it accessible to us because the world won’t. We make access where this isn’t any— and that’s really not okay. 

I do not have the choice of cancelling on my disability — like that girl did to our hangout plans last-minute — even if it would be nice on the days where it rains. I can’t cancel on it when I’m unsure if I can handle another medical procedure. I cannot take a break from my illness, my wheelchair or any of the things about being disabled that are not fun. I can’t take a break, even when I’m tired. And really tired of the fear of COVID-19. I can’t take a break because this is my life. 

I sometimes wonder what it would feel to wake up, get dressed, and not plan out my day with precision. Wouldn’t it be lovely to go somewhere without messaging or calling the venue first to see if they’re wheelchair accessible? Or to not be nervous that the person didn’t relay poor information? That has happened more than once. I know that it will happen again.

This world, as I said, is always thinking with able-bodied people in mind. The homes, store-fronts, and even public buildings serve us forget that disabled people have lives too. We want to live freely too. 

When you live in a world that is not accessible to you: it becomes normals in aspects to experience exclusion. To me, that’s what inaccessibility feels like. It’s being excluded and continually reminders that this world is excluding you from experiencing it.

That is the life of inaccessibility.

July is Disability Pride Month! That’s right! PRIDE MONTH! 30 days of Disability Pride!

Just like the image says, I’m going to be using the platform here to be taking advantage of how we can celebrate inclusion. It’s also so important to encourage and promote accessibility. I’m beyond excited to show off the incredible diversity in our disabled community. The disabled community is so incredible. I‘m so happy to be apart of this truly amazing community of advocates.

I’m going to be using my platform this month to elevate and amplify the disabled community, but also taking advantage of educating during this time. I have been blessed over the years (and especially the past few weeks) to be educated by many loved ones and friends with wisdom and guidance on social issues. I am happy to guide in the same way.

While cities like New York and Philadelphia have parades to celebrate Disability Pride, they were cancelled (understandably) and either moved to virtual celebrations or are focused their energy to host bigger celebrations next year. I may not have a city where Disability Parades have happened (maybe some time soon!), I do have a platform. Through that platform, I can use it to educate as I mentioned. This is something that I’m choosing to consciously to do as a way to foster something that may help. Education by my loved ones made a huge impact in my life.

Let’s also remember during Disability Pride time that disabled people encompass minorities, immigrants, multiple sexualities/identities, etc. As we navigate 2020, it’s imperative to remember that Black disabled people (especially women/womnx) are apart of this equation. One of my dear friends with a progressive, debilitating and rare disease brought up recently about a racist experience that she experienced at the hospital. The system is already setup to disavow disabled people, even when they’re not Black.

As we go into Disability Pride Month, I want to talk so proudly about all of the things that I love and hate about being a person with a disability. I want to talk rawly about the privileges I will never have because I am a woman with a disability. In that same light, I must acknowledge my skin is not black like my friend and I never experienced anything like her. We have to talk simple here because sometimes people don’t get it. I want to talk about the way I wish I could attend a parade because I am so lonely some days. I want to be honest, raw, and make people proud because I am proud of who I am. And who I am is a person with a disability. These are all thoughts I have thought in relation to “Disability Pride” and they are important. Inclusion, diversity, and accessibility are important. Disability refers to both physical and non-physical disabilities.

It means people like me, but also hearing disabilities, visual, hearing and developmental disabilities too. Disabled people can have invisible disabilities where their disability and or chronic illness makes them appear able-bodied. The same way you may not know a person is low-vision. Bottom line: disabled people are diverse and that needs to be apart of our Disability Pride 2020. Diversity is rad.

With all that I said,

Happy Disability Pride Month, friends!

P.S. This is a new exciting chapter of my life and I’m very excited this aligned with July. As many of my friends know, I’ve revamped The Girl in the Pink Wheelchair to be completely accessible to all disabilities including screen readers and low-vision. Old posts will start “popping up” as the images get Photo IDed. Be patient with me, friends. I had surgery recently and I’m still moving slow. Slowly, but surely!!!

Disability Pride Month is an exciting thing in itself, despite many celebrations being cancelled. But hey – who knows? I have some ideas of my own!! Wait and see! 😉