Online communities play a crucial role in connecting disabled people with each other, yet only 3% of the internet is accessible to disabled people, limiting their access to crucial information and services. Online communities can bridge this gap and provide a strong sense of connection as group members share resources. The right fit can make all the difference in the world, helping to normalize living with disability in a world where so many conditions can be isolating. This sense of normalcy typically occurs through meeting people with life experiences that are so similar to yours that, for the very first time, you understand that who you are and how you’ve chosen to live your life isn’t something to be ashamed of.

“Online communities play a crucial role in connecting disabled people with each other, yet only 3% of the internet is accessible to disabled people.”

Lucía Feito Allonca is someone who has experienced this sense of normalcy firsthand.  Lucía and I know each other because she’s a strategic committee member of Voices in Action, a diabetes-focused not-for-profit that my spouse founded. Lucía told me that she used to be very private about living with type 1 diabetes, but being part of online communities made public disclosure feel less intimidating. She also told me that “I didn’t have that many people close to me living with type 1 diabetes. Then I discovered online communities. With access to these communities, you are not alone anymore.”

Since birth, I have lived with a neurological condition called dyspraxia. Dyspraxia presents challenges with the coordination, planning, and sequencing of movement. The core reason why I have found online community access particularly helpful is that dyspraxia can be a lonely journey. In fact, if you’ve never heard of it, you’re not the only one. Dyspraxia’s level of awareness and availability of resources is low globally. It wasn’t until the early days of the COVID pandemic that I met other dyspraxic people.

Friendships with dyspraxic people would never have been possible without online community access. Sometimes, I have managed to meet my online friends offline through the coincidence of being in the same city or at the same event. So far, I have had nothing but good experiences with in-person meetings. Every conversation has felt both comfortable and familiar. By the time we meet in person, there’s a strong sense of trust that we will find a way to reconnect.

How online communities address loneliness

You don’t have to meet in person to have a strong and worthwhile online friendship, because tackling loneliness is much more crucial. According to a British disability charity study on loneliness and disability, loneliness is “a mental health crisis that the disability community is facing,” a phenomenon not limited to the UK. So, why is this loneliness happening? And how are online communities making a difference, even without IRL meet-ups?

Pre-internet, all our relationships relied on communal experiences — work, schools, religious institutions, and restaurants, for example. It’s definitely still possible to have meaningful experiences in these settings. But there’s only one catch: Communal experiences are only enjoyable if the same social experiences and environments are as accessible to you as your neighbours, peers, and colleagues. Something that may be fun and easy to understand for your peers is something that you have to explain why it’s neither fun nor easy for you. Because not everyone is patient or understanding enough, the need to say that you can only participate if things are done differently can feel very intimidating. After all, the risk of peer stigma, bullying, and isolation is always lingering in the background.

“Communal experiences are only enjoyable if the same social experiences and environments are as accessible to you as your neighbours, peers, and colleagues.”

For instance, when I lived in Toronto, as much as I enjoyed yoga, I actually didn’t go to that many classes in person. That was largely because the instructor’s verbal instructions were conveyed without movement or visual demonstrations. Without movement or visual aids included in verbal instructions for movement-based activities, I cannot understand movements I haven’t practiced hundreds of times before. Since everyone else found verbal-based instructions straightforward to understand, asking for a different method of communication felt shameful, uncomfortable, and inconvenient. Much of my understanding and appreciation of yoga happened through practicing at my own pace and in my own environment.

Online disability communities typically serve a mutual purpose. Many of these communities are supportive and safe spaces to socialize in a context that feels comfortable to the entire community as a whole. Yet the answers to where to find online disability communities are much more complex than they used to be.

Accessibility to online communities in a new era 

X used to be a central discussion platform for the disability community. Yet, in its Elon Musk era, it’s an inaccessible platform for far too many disabled people. Everything from alt text to third-party applications that enable compatibility with screen readers is no longer widely available. Then there’s Meta, X’s competitor, which owns Instagram, Threads, and Facebook. Since Trump’s election, Meta has embraced right-wing policies and values. Because of Meta’s change in values, many disabled users have left Meta completely. Since both platforms are not as popular as they once were, users have scattered elsewhere. For so many disabled people, socializing online is the only option, so there is a rush to other platforms.

Take Mary Kilbane, for instance. Mary is an autistic and dyspraxic woman from Longford Town, a village in rural Ireland. Mary told me, “In our village, the only face-to-face social hub is the GAA football club. If you can’t kick a ball, that creates isolation. The GAA club is where people form connections for work, relationships, and marriage.”

Many of the skills required to take part in a football club aren’t what Mary is particularly good at. So, online communities allow her to interact with a supportive, neurodivergent-dominated peer group. Mary and I know each other from a virtual cardio fitness workout group, which is neurodivergent-run and consists of a proudly neurodivergent peer group. Typically, we meet up an average of once to twice a week to conduct an hour of gentle cardio stretches and friendly banter with one another. The main, unspoken rule of the group is that no one has to do any of the stretches perfectly; they just have to do the stretches in whatever way feels natural and comfortable for them.

“The main, unspoken rule of the group is that no one has to do any of the stretches perfectly; they just have to do the stretches in whatever way feels natural and comfortable for them.”

In addition to the fitness group, Mary is also part of her local Toastmasters group, a public speaking and communications skills development-focused not-for-profit. Both the fitness group and Toastmasters’ virtual programming are a central part of Mary’s peer group. Many of her experiences with online communities have been so positive that she said, “Online communities help me feel connected to the world.”

However, for Pippa Stacey, a core part of staying connected to the world is accessible event spaces. Pippa lives with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Because of her disability, she felt invisible to the wider world for many years. Accessibility is never a promise or a guarantee on any given day, but online activities give her full control over her own surroundings. She also added, “Managing my chronic illness consumed so much energy and brain space. I was starting to forget who I was outside of it.”

“Accessibility is never a promise or a guarantee on any given day, but online activities give her full control over her own surroundings.”

Even still, online events aren’t always accessible enough to every disabled person. Jonathan Lazar once said, “Websites often offer opportunities for one group. Yet it excludes another.” A common reason why this occurs is due to the affordability or quality of the internet connection locally, but much of the inaccessibility occurs through having a one-dimensional view of what accessibility even means. For instance, we cannot call a virtual event accessible simply because one person with a disability that affects their mobility in their arms had the right devices and accessories to interact with a Zoom-based event. If there was also insufficient closed captioning for deaf participants and a lack of compatibility with nonverbal autistic people’s text-to-speech software, then something about the event’s accessibility efforts clearly isn’t working. Although the problem may also be due to the platform’s accessibility features. Since many of these communities are founded in response to the inaccessibility of certain activities, there’s always room for improvement. Often, all efforts made to improve are based on the feedback of other group members.

One such example of what this looks like is my fitness group. Many of my group members found Zoom difficult to navigate so we switched over to Discord instead. As a volunteer-run group, we lack the budget to buy a Zoom Pro account. On Zoom, we had the added hassle of having to log everyone back in again after the time limit. Also, some group members’ internet servers are unable to handle a Zoom call with many people. With Discord, we have encountered far fewer barriers so far.

With all the above in mind, you’re likely wondering: How do you identify a group that will be a good fit for you? Finding the right online community for you doesn’t always happen immediately. It can take a bit of self-awareness of what your ideal online community looks like, a bit of time, and some patience to experience results. But the only way to know for sure is to take a chance on groups that are of interest to you. As Lucía Feito Allonca explained to me, “If you don’t feel comfortable, you don’t have to stay in a space that is not meant for you. But if you are comfortable, continue being part of that space and even helping co-create and build it.”

“The only way to know for sure is to take a chance on groups that are of interest to you.”

I’m currently in a place in my life where I have not yet found online community with others who have thyroid disease, a chronic illness I live with. I have met plenty of women with thyroid conditions in person, however. Many of these interactions have happened because of my thyroid surgery scar. The scar alone tends to start a lot of conversations with others who have had the same surgery. But since I am still a firm believer in the value of online friendships, given how helpful it has been for at least one of the disabilities I live with, I’m considering how to find it again.

Here’s what I know from my involvement with online communities: To avoid having a bad experience, look for groups where the emphasis is on supporting each other. That experience of everyone supporting each other equally is crucial, because of what the alternative happens to be: A select number of group members being treated like unpaid therapists while getting nothing in return.

“To avoid having a bad experience, look for groups where the emphasis is on supporting each other.”

The truly worthwhile groups are the ones providing peer support, an attribute with immense emotional benefits. The Independent Living Institute once pointed out that peer support is especially crucial because disabled people are experts on not only the barriers they face, but also the strategies that help them tackle these barriers. In the right disability community, your disability symptoms will start to feel normal because you are regularly interacting with people with mutual symptoms.

Tech platforms themselves may shift and change in the long run. But communities that are worth your time will always create accessible experiences. In groups that people come back to time and time again, there isn’t one leader. Everyone is welcome to take part in all efforts made to make future activities enjoyable for all.

“Tech platforms themselves may shift and change in the long run. But communities that are worth your time will always create accessible experiences.”

To be ready to engage with these groups in a meaningful way, it is best to be in a very specific mindset. Mary Kilbane is someone who has learned a great deal about what that looks like. Mary told me that you should “be in a good mental space first. Research groups through Trustpilot or reviews. If someone recommends a group, talk to them about it. Ask questions. Attend as a guest if possible and see how it feels before committing.”

Most importantly, however, you should always engage with the people you meet on these platforms with an open mind. Many of these groups are full of people with differing life experiences. With a willingness to mutually support each other, you are likely to have a positive experience. 

My final thoughts

Although online communities aren’t for everyone, those who experience the benefits soon learn that they are truly worth it. For that exact reason, online friendships should be treated as just as deep and meaningful as friendships formed exclusively offline. After all, online friendships can make such a huge difference in the lives of disabled people worldwide when truly supportive and kind people are involved.

“Online friendships should be treated as just as deep and meaningful as friendships formed exclusively offline.”

If you’re disabled, however, these groups may truly surprise you by introducing you to like-minded people who can change your perspective on your disability for the better. That benefit in particular is crucial, given that having accessibility needs that not everyone is willing to take seriously can be an emotionally draining experience to navigate.

Online friendships, however, give you access to a network of people who can equip you with lived experience-informed coping mechanisms and discuss the joys and struggles of being disabled in your everyday life.

Rosemary Richings is a Toronto, Canada-based writer, editor, and content strategist. She has ten years of experience running her blog, a lifetime of experience with writing in every genre, and five years of experience running her own business. This has made it possible for her to help lifestyle startups, such as Lokafy and BeFunky Inc, and large brands, such as Yellowpages Canada and eBay take a big picture approach to blogging. Rosemary’s writing has been featured on dozens of websites including Saatva, Buffer, Weebly, and Get Response. As someone who has lived with a disability since birth, and has so many different family members with disabilities, she is also a passionate supporter and advocate for the disability community.