Learning to leave guilt behind as a disabled person

‘Sorry for any inconvenience this may cause.’ I type as I craft an email requesting some documents to be provided in an alternative, more accessible, format. Then, I catch myself and poise my finger above the backspace key, tentatively pressing it until any form of apology is erased from my screen. 

It’s a big thing, unlearning a habit you’ve possessed for as long as you can remember. I’m a chronic apologiser, or at least I used to be. I constantly found myself saying sorry for the most trivial things and situations that I wasn’t even a part of.

I’m sure we’ve all been guilty of it at one time or another, take saying sorry when someone else bumps into you as an example, that’s a classic. 

For me, this habit of apologising is implicit with being a people pleaser. It’s damage control, as if issuing the word will diffuse any form of argument or dislike before it ignites. But something I realised a little while ago is how symptomatic it is of the guilt I feel as a disabled person. 

It’s only now, as I grow up and have open conversations with fellow disabled people that I realise how much guilt has plagued my life, and how familiar this feeling is to others too. 

Over the years, I’ve felt guilt for asking for reasonable adjustments. Guilt for not asking for reasonable adjustments and putting myself at a disadvantage. Guilt for taking time off work. Guilt for almost tripping someone up with my cane. Guilt for asking someone to guide me. And most ironically, guilt for feeling guilty when I know I shouldn’t.  

I’ve felt a lot of emotions as a result of being vision impaired; anxiety, grief, loneliness, and more. All of them simmering in a cauldron, preparing to emerge in a plume of steam that would curl upwards to claim my mental energy.

All of these feelings have been or are intrinsic with specific elements of my vision impairment journey. Loneliness permeated some of my time in school, grief always pops up in the wake of further deterioration, and guilt, well guilt is an interesting addition to the mix, something that is a little harder to understand. 

I recently realised how long it’s been living rent-free in my head, letting me to deal with the mess of angst and doubts it leaves lying around. 

With that realisation came another, one that spurred me on to think of the ways I can evict this unpleasant lodger.

It’s not an easy feat but here are just a few practices and reminders I’ve kept in mind when unlearning some of that guilt over the past few years. 

Acknowledging the importance and value of adjustments and support

We live in a world that wasn’t designed for those of us who are vision impaired/disabled so reasonable adjustments are a must to make sure we are on a level-playing field in terms of work, study, hobbies, travel and everything beyond those things. 

I no longer hesitate before asking for adjustments, the workaholic in me mostly responsible for that as it screams that I cannot work if I don’t ask for a PDF that’s full of vital information to be provided in an accessible Word format. 

But issuing that request hasn’t always been easy.

I’ve often let guilt deny me from asking for the adjustments I need out of fear of staining someone’s to-do list with an extra task.

So at the core of this guilt was the belief that adjustments weren’t so much beneficial to me as they were inconvenient for someone else to implement. 

But there was also a different kind of guilt related to having reasonable adjustments in place that was at play, specifically during my time in school. 

‘She gets to work on an iPad or laptop.’ This was a line I often heard but I didn’t feel confident enough to voice the fact that I wouldn’t be able to work at all without them. 

But the guilt of it all did occasionally see me favouring a large notebook and thick black pen to scribble notes instead, words that would morph together during any attempt I’d make to read it over later, rendering the effort pointless. I’d create extra work for myself by typing up the same notes later during free lessons or time I should have spent resting at home to loosen the grip of the eyestrain that manifested itself as a result of such punishing concentration. 

Then came the guilt that I was allowing other people’s opinions to dictate how I worked and that I was putting myself at a disadvantage by trying to ‘fit in’. The politics of this feeling has always been very confusing, as you can tell. 

I did eventually become very cognisant of how damaging operating in this way was both for my mental and physical health and I’ve realised that I am doing myself a disservice by allowing guilt to dictate how and when I ask for any kind of adjustment or support. 

As disabled people we deserve reasonable adjustments to remedy any form of inaccessibility, it’s not a luxury or a nice-to-have, it’s our right, which brings me on to the next point. 

Knowing my rights

We don’t learn much about our rights when growing up. We aren’t told about the Equality Act and what it represents or what happens when we feel like our rights aren’t being met. 

With the topic lacking in our education system, we have to take the onus of learning on ourselves. It wasn’t until I started working in the third sector that my eyes were opened to the world of disability rights and that there are laws that exist to protect us from discrimination in places like work, school and when using public transport. 

This helped me to realise that as a disabled person, it’s my right to be on a level-playing field with everyone else. I shouldn’t feel guilty for asking to be there. 

It’s not my fault

Committing to self-kindness instead of self-blame has been pivotal for me in my quest to leave guilt behind. 

As I mentioned earlier, I have a platinum membership to the people-pleasing club and so I’ve always felt guilty for asking for any kind of accommodations or support since I don’t want anyone to think I’m being an inconvenience or a pain.

I’ve been guilty of trying to convert PDF’s into Word myself to save from asking the document’s author from taking on the task, with varying levels of failure. 

Self-blame was rooted in society’s narrative that we are the problem and meant that I was settling for less than I deserved when it came to access to information and services. But I have since had a lightbulb moment which helped me to realise that I am not the problem. 

I’ve realised that it’s not my fault if something isn’t accessible and so it’s not my place to feel guilty for asking it to be. 

Talking it through

Unlike when I was a teenager, I now have a strong network of disabled people around me. A lot of the conversations we’ve had and continue to have are so cathartic and help me to realise that the feelings I’ve had whilst growing up have often manifested in others lives too. 

So many others have sacrificed their own requirements out of fear of others perceptions and are pursuing their own journey to shrugging the shoal of guilt off their shoulders. 

Whilst it’s sad to know this feeling is far from uncommon, knowing that others have or do experience it and talking it through can help in confronting it and finding ways to wave it off. 

It’s also important to note that if you feel like guilt or any other feeling that’s inhabiting your mental space is consuming you or taking too much of your energy, professional support is out there, never feel guilty for asking for it. 

You don’t have to do it alone. 

Practicing self-advocacy

As I’ve parroted throughout this post, guilt has long marred my requests for any kind of support in relation to my impairment but over time, it has become easier. 

Practicing self-advocacy has been one of the most powerful tools in eliminating guilt from my life.

It’s not an overnight fix of course. Self-advocacy takes years to master and I’m still learning but all of the other points I’ve mentioned throughout this post have all aided in giving life to my self-advocacy skills. 

Speaking up for yourself and your rights isn’t easy, especially when you’ve spent years believing them to be an inconvenience to others. Guilt has quite often created a cocktail of emotions that has not been pleasant to drink but all of the points I’ve mentioned in this post help to nurse the hangover and as the symptoms fade, I find myself asking for support, requesting reasonable adjustments and slowly learning to do that unapologetically. 

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Have you ever experienced guilt as a disabled person? Through conversations I’ve had with others, I’ve realised that the feeling is much more universal than I initially thought. It’s quite damaging when you think about it, that society has us believing that we are an inconvenience for asking to be treated as equals. 

I should say that I haven’t necessarily had any particularly bad experiences when requesting any kind of support or adjustment. For the most part, people are willing to accommodate but it’s this overarching historic societal attitude that had me second-guessing my right to ask. I’d like to think with a burgeoning grain of hope that things are changing and that spaces are becoming more accommodating but I know that I will have to continue asking for access before it comes close to being standard. If guilt comes calling when I prepare to ask, I have the confidence now to say that there’s no room at the inn. 

Access and equality should be the norm. It’s society’s responsibility to ensure that is reality, not our place to feel guilty for asking it to be. Always remember that.

Elin x