The Experience of Isolation as a Disabled Person

In a world that often emphasizes connectivity and inclusivity, the experience of isolation can be a profound and poignant one, particularly for disabled people. The barriers to social engagement, physical accessibility, and even a lack of understanding of living a disabled existance, can create a profound sense of loneliness that permeates many aspects of daily life. In this blog post, I want to explore the complex landscape of isolation as experienced by disabled individuals, shedding light on the emotional toll it takes and offering insights into fostering greater understanding and support by our non-disabled friends, family, and society as a whole.

One thing I don’t think is talked about enough in the disability community is isolation— both physical and mental/emotional. To be completely candid (and maybe a little controversial,) I think we talk a good game about community and support, but that sometimes, when push comes to shove, the harsh reality of aloneness rears it’s ugly head. I’ve lived this experience in my disabled life. And if I have, I’m sure others have too.

Don’t get me wrong. I am not here to demonize the disability community, or any one person in particular. I think there are genuine experiences of mutual support, peer support and real community advocacy that does occur every day for disabled folks. It’s just that the lack of support can happen, too. And I think that is worthy of being addressed. If anything, for the simple validation of anyone who is reading this post who has experienced feeling completely alone at some point in the their disability journey as well.

In some ways, when I think about the lack of reciprocal support among disabled people, it is understandable. To put it bluntly, we have to put our own selves first— because no one else certainly is. The primal instincts of self-preservation don’t just disappear because a person is disabled. In fact, I would argue the need for self-preservation (and self-advocacy) is even more heightened because many of us are simply in survival mode every damn day. So, for example when my disabled friend calls me and asks me if I can help them with x, y or z, in most instances these days I have to politely decline. Not because I don’t want to help, but because I’m simply too consumed with caring for the needs of my own life. If everyone in the community is experiencing the same thing, it is understandable to see how it’s hard to show up for each other, and thus, situations of isolation can occur.

One other aspect about support and feelings of isolation that I want to mention, and again, might be somewhat taboo, is the sharing of resources and information. The reality is, that the amount of high quality support services for disabled people in the United States is a limited resource. There are only so many good medical providers, social service agencies and community support organizations that exist. And therefore, I think there is a tendency for what I will call “resource withholding.” I had an experience once when I reached out to my local disability community for a medical resource, and received only a limited response that I could have just Googled on the internet myself. There were no consequential specifics shared. Why? Because those who have already found the “good” resource are hesitant to share it for fear that it will negatively impact their own care. Again, I get it, but I find it unfortunate. Indeed, this is only one example, but I have to believe it happens more than we like to admit or talk about.

Beyond what I have described above, the feeling of isolation among disabled people can begin with the tangible physical barriers in their surroundings. Whether it's navigating spaces that lack accessible spaces, or facing technological limitations that impede communication, the physical world often presents formidable challenges. These barriers can lead to a sense of exclusion from social activities, workplaces, and even basic interactions. The result are feelings of isolation and marginalization. Unfortunately I’ve attended far too many events hosted by a disabled person that still lack full accessibility. How are we supposed to expect the non-disabled society to include us when we don’t fully include either other? Is it possible to truly execute on the promise of “Nothing About Us Without Us?” while reinforcing such exclusion?

The emotional toll of isolation can be equally significant. The constant struggle to fit into a world that often seems designed without consideration for one's needs can foster feelings of inadequacy, hurt, and despair. And these feelings are only magnified when they are felt from within the very community you feel like you are supposed to be a part of. Rejection from one’s own “tribe” cuts deep. I’ve read conversations on social media that break my heart. They are raw and unvarnished, mostly because it’s the most accessible space a disabled person has to share their feelings, thoughts and experiences. I don’t feel pity for the individual. What I feel is frustration about existing systemic factors that have created the isolation they are living. In these online spaces I reply with words of support such as “You are not alone.” I know it is better than nothing, but in truth, it just feels like a very empty platitude.

Indeed, addressing the systemic factors that cause disabled people to experience social, physical and emotional isolation, requires a multifaceted approach. This includes advocating for greater accessibility in physical spaces, technology, and communication channels, as well as challenging ableist societal attitudes and perceptions that perpetuate disability exclusion and discrimination. I hope addressing this issue through this blog post can be a first step toward a better tomorrow. And by better I don’t mean simple answers and false promises. The limitations I outlined above are real and aren’t just going to magically disappear, no matter anyone’s best intentions. But let’s at least start to have real talk on the topic of isolation. Only then may true change come about.

My concluding thought is still one of hope and optimism. Despite all the challenges that disabled people face on a daily basis, we still seek out and value authentic connection and community. And that is a good thing. We understand, either by choice or necessity, the paramount importance of support networks in navigating the complexities of our lived experiences. Whether through online forums, support groups, or advocacy organizations, finding spaces where one's voice is heard and understood can be profoundly empowering. These communal spaces offer not only practical advice and resources but also a sense of belonging and validation that can counteract the isolating effects of ableism. I know if we try, we can be here for each other as much as we possibly can. And some times the smallest act of connection and kindness can have the biggest impact of all.