Hi, all! Welcome to November. My name is Bridgette, and I’m a writer. I share about my lived experience as a Deaf person, living with Ehlers-Danlos Syndrome, POTS, Dysautonomia, Fibromyalgia, Autism, Chronic Migraines, and more. I’m honoured to have been selected to introduce this month’s issue.

I know what you’re all thinking… where did this year go? Despite COVID-19, It’s been a massive year for Disability awareness. We have a long way to go in terms of accessibility, and equity in the mainstream world. Having said that, the spotlight seems to finally be shining on Disabled and Chronically Ill folks. It seems that online spaces have opened conversations around disability which allows us the opportunity to finally have our voices heard.

I don’t know about anybody else, but I have been exhausted trying to juggle multiple medical conditions, taking care of my body and home, adjusting to the constant shifts between lockdowns and attending medical appointments, while also trying to advocate for things that mean the most to me. It’s not easy having to advocate just to exist. Most of us are constantly checking accessibility for venues that we attend, in our workplaces or schools, at events or restaurants, or even our medical appointments. A lot of people are faced with barriers in their own home, and the moment that they venture outside. Dealing with these challenges and trying to make changes around them can be taxing on our mental health. Here is your reminder to take it easy and to do something kind for yourself.

The shared experience of lockdowns and restrictions have been hard on us all. We must remember not to be so hard on ourselves. We’re already going through hardships that others often haven’t even thought about. For example, my disability insurance co-ordinator was shocked at the idea of face masks presenting as a barrier for my hearing loss. I rely on lipreading as a Deaf individual, and so I explained that navigating physical spaces has been incredibly difficult with face masks during restrictions. It already felt near impossible for me to cope in person before face mask coverings were introduced. We are all experiencing added layers of barriers on top of our usual issues with health and need for help.

The plus side is that COVID-19 has allowed many institutions and organisations to experiment more with moving things online. This option has given newfound freedom and accessibility for many Disabled and Chronically Ill people. Unfortunately, we have been asking for these reasonable adjustments for years. It was only made available because it impacted those who were suddenly faced with restrictions. But they are not the people these options benefit the most. Those who aren’t disabled cannot pick and choose when they allow advancements, especially when these adjustments are paramount for improving lives for people who are Disabled. We deserve an equal consideration in all roles.

Despite the small strides of progress that has been made, most online environments still don’t include captions. Now that we’ve all been faced with these restrictions and changes, we know that it’s possible to adapt. We must create content and environments that includes all people.

Sadly, as online environments continue to be targeted at community members who aren’t Disabled, I’ve not received the adjustments that I need. I have been excluded from multiple learning opportunities and events. My educational institutions don’t have features in place to include people like me. Inaccessibility perpetuates harmful stereotypes; if you have not seen Disabled and Chronically Ill people in public spaces, it’s because they’re not designed to accommodate and include a space for us. This furthers the idea that we are not capable of accomplishments and fuels the infantilisation of Disabled people. It also contributes to society seeing us as an inspiration for achieving basic tasks. We deserve the chance to be involved in our communities, and for our contributions to be recognised. Not having access to captions limits my ability to participate as an individual.

Due to being chronically ill, I have medical barriers that also prevent me from accessing everyday tasks. Inaccessible environments, public sectors and institutions compound the impacts of marginalisation. But I’ve learnt something over the past year. These obstacles are not my responsibility. This has been immensely refreshing. If you have been blaming yourself for not being able to participate, please be gentler to yourself. You are living in a world that is not designed to accommodate for you. It is tough trying to make these changes alone. We should not have to be asking for accommodations that should already be there. Avoid blaming yourself and remember that you are faced with structural issues of inaccessibility that are beyond you. It is important to let the people around you know what is going on, and to stand firm in your access requests.

Inaccessible learning spaces have taught me to review my perception of self and my “shortcomings”. It has taken a lifetime, but I’m slowly reframing internalised ableist views towards myself. Instead, I’m trying to focus on giving myself compassion and how I can give more attention to my needs. Since I’ve started to share my journey, and my difficulties, I’ve learned from others that constant obstacles are not an everyday feature in the lives of people who are not Disabled. This shocked me. I was taught that there is no shame in needing more help. When we have been dismissed, and ignored for so long, it’s easy to give up and blame our circumstances. We learn to stop asking for more, because we are made to feel like a burden or that help is just not possible. COVID-19 proved that this is not true. Other people in our situations would ask for more, and they have during this pandemic.

It is important to note that we still face incredible difficulties even with adjustments. We are not asking for special treatment. Studies show that we still lag behind our peers despite assistive technologies and etc. To put it simply, you are not a burden for needing help to access something. Access should be automatic, so that anybody may participate at any given time. We must be considered in the design process. If we are being denied access, or we need help to access an environment, resource, venue, event, or audio/visual media, then it has not been made for all people.  We must strive towards Universal accessibility. We all deserve to have accessible environments and lifestyles. Many of us are battling multiple medical conditions and disabilities. This is exhausting, time consuming, and financially draining. We shouldn’t have to also fight to be involved and heard. It’s dehumanising to ask to exist. But nevertheless, we persist.

- Bridgette Scalisi

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@bridgettescalisi