Everyone should set boundaries – but it's hard when you're disabled

As I was laying in bed for the fourth consecutive day – with crumpled tissues strewn across the floor and a makeshift pharmacy on my bedside table – I looked at my two sphynx cats who had sensed their mother wasn’t too well and sat with me in solidarity.

The lurgy got me, and it got me good and proper. It was bound to happen sooner or later.

It was a common cold, but – as someone who has underlying health conditions and a reduced breathing capacity – a common cold can quickly escalate because I have a notably weakened immune system.

I looked more like Rudolph who had been sleeping in a dumpster, rather than the glampuss I am known to be.

But none of that mattered because I was in bed and resting – allowing my body to heal and rejuvenate. This is something I seldom manage when I get sick, simply because I’m pretty rubbish at setting boundaries. 

Usually, I try to power through even when I should be lying horizontal in my bed watching Buffy re-runs. This time, however, I decided to prioritise myself. 

The thing is: When you set personal boundaries, you are essentially saying that this is what I’m OK with and this is what I’m not. Good boundaries are important to ensure we protect our physical and mental wellbeing, personal space, safety and security.

I’ve always had trouble setting boundaries.

I often joke that I have Napoleon syndrome. I’m a strong feisty character in a little body and therefore I tend to overcompensate for my petite stature with a fireball tenacity and a can-do attitude – even when I’m sick.

The day after my spinal fusion operation in 2006, even after complications, I was trying to grab onto the railings of my hospital bed to lift my limp body up because I was determined to get back to ‘normal’. 

This nature has always been applauded by my peers – seen as a fighter and a go-getter – but this cold was different. 

I finally realised I wasn’t OK and I needed more time to heal. I decided from that moment forward I would listen to my body, instead of my mind. 

I was clearly tired of being that person who worked around others, my commitments and friendships – instead of the person who spoke up and set personal boundaries.

As a disabled person, a lot of my problem with setting boundaries has to do with my internalised ableism. It’s a voice that says I am inferior or that my needs as a disabled woman aren’t as important or worth respecting in comparison to non-disabled people.

These feelings run deep and are totally insidious in nature. Disabled people have a lot of external pressures not only to fit into an able world but also because when we speak our truths and set boundaries, it can put us in financial or emotional danger. 

As a disabled person, a lot of my problem with setting boundaries has to do with my internalised ableism

Taking time off can not only hit us in our pockets, but it can also mean we experience rather harmful ableist comments from colleagues or the media to perpetuate the narrative that disabled people are lazy or hard to work with. Attitudes that reinforce the view that disabled people are always sick, incapable or a burden.

Society often views the need for rest as failure. We live in a world that praises overworking as a sign of our passion and productivity.

During my recent sickness, after I’d exhausted all the true crime documentaries on Netflix, I began to make notes for this column and think about all the ways I’ve allowed my boundaries to be exploited. 

It ranged from not asking for time off work while ill to finding myself in a situation with a sexual partner and saying ‘yes’ to something I wasn’t comfortable with just so I could feel like I fit in.

In all honesty, I’ve allowed my boundaries to be exploited because I’ve been so scared that I’d be left behind or that I’d miss out on quintessentially human experiences I often feel are out of reach in a disabling world.

I think back to many of my sexual partners. In truth I didn’t want to have sex with many of them, but I did because I wanted a sense of normalcy in my life. I wanted to be able to have ‘girl talk’ with my friends about what I got up to with a guy – and not live up to the stereotypical infantilised versions of disabled people.

What I ended up with was a feeling of emptiness and even disgust with myself. Why? Because I was going against my own boundaries. 

I think back to all the times I’ve said yes to strangers – bouncers, security guards or friends carrying my wheelchair up a few flights of stairs because the lift was broken, or they hadn’t thought about my access needs.

There was one occasion where I had signed up for a photoshoot opportunity that had specifically asked for disabled models. Upon arrival, the shoot was on the third floor, but it had no lift or no accessible toilet.

What ensued was a rather uncomfortable conversation with the organisers and two non-disabled male models stood at the entrance trying to convince me – a person with brittle bones – that they could simply carry me up the narrow staircase and all would be resolved.

On this occasion, I did set my boundaries out of sheer terror of the prospect of being lifted, but as I got into the taxi to return home – moments after only arriving – I was left feeling guilty, a ‘nuisance’. Worse still, I questioned my decision and boundaries, as though me saying no was me being awkward.

Disabled people are often pressured into doing things that totally step outside the realm of our boundaries just to be accepted, fit in or overcome ableism.

But setting healthy boundaries comes with a greater sense of self-worth. 

It’s sad that I still find myself questioning my own boundaries but I’m determined to prioritise myself in the future. 

I would love for my disability allies to recognise that the needs of disabled people are not too dissimilar to their own.

Perhaps once we stop putting so much emphasis on the notion of what normal is – from work, relationships and life in general – then we will be able to state what we feel comfortable with and what we don’t in a more respectful and valued way.

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