Author: Zoe Simmons
One in five Australians is disabled, yet despite how common it is, it can be hard to be disabled and navigate relationships, from your friends to family members, colleagues, or romantic relationships.
The truth is: it can be pretty hard to be disabled, whether it’s physical, mental, sensory, or invisible, Disabled people face a lot of barriers, plus rampant stigma and ableism. In many cases, people internalise these negative messages and they may not even realise the harm their pre-conceived notions of disability might cause, especially to their disabled loved ones. That’s why it’s vitally important to learn—or rather, unlearn ableism.
That’s why I’m writing this article. I’m Zoe Simmons, a disabled journalist, speaker, author and advocate. I have multiple mental and physical disabilities, including ones I’ve developed as an adult. And I’ll be honest: I’ve had some pretty awful experiences with people who care about me because of their ableism and stigma. So, I’m here to shed light on the disabled experience, smash misconceptions and ableism, and share how you can better support the disabled people in your life.
You might notice I’ve referred to myself as a disabled person, rather than a person with disability – and I’ve done that deliberately. As a society, we’re often pressured to distance ourselves from disability. That we should see the person, and not their disability, and use person-centred language (like the term “people with disability”). But, in my perspective, this notion to distance ourselves from disability is quite ableist. It suggests disability is something that should be distanced, and this rhetoric is often unhelpful: I need you to see and recognise my disability, and I need you to consider my access needs.
That’s why I prefer identity-first language, like disabled person – because I am a disabled person, and that‘s not a bad thing. For me, it reclaims a stigmatising word into an identity I‘m proud of, and while every disabled person has different thoughts, I‘d say identity-first language has become the preference in a vast number of disability advocacy spaces, especially in the youth sector. It‘s the same with the autistic community preferring to be called autistic, rather than a person with autism. We can‘t take off our disabilities like we could take off a handbag: it‘s part of us.
Understanding disability
The first part of being a better support for disabled people in your life is to take the time to really learn about and understand disability. Disability is diverse. There are so many different kinds, both visible and non-visible, and some are dynamic, meaning someone’s symptoms or needs might fluctuate. All disabilities are valid and there is no hierarchy, despite what some might say.
A lot of newly disabled people might worry they’re not “disabled enough”, which might mean they don’t feel comfortable embracing their identity or advocating for their access needs. It’s a big learning (and unlearning) process, especially if they weren’t born with their disability.
It can be hard for our loved ones to understand. We’re often told to distance ourselves from our disabilities. Sometimes, it can be really hard to trade in that shame for pride. When I first started identifying as disabled, I had people tell me things like “aww don’t call yourself that”, as if it was an insult. But it’s not.
As a society, disability has been traditionally viewed from a negative lens (in some US states it was actually illegal to be disabled in public). Often, our stories are told through non-disabled people that paint our lives as either a tragedy or as inspiration porn.
These negative views can contribute to the stigma around disability and make a lot of people not want to embrace their disabled identity and needs. For me, identifying as disabled was a turning point and incredibly empowering. While it was a hard journey, it allowed me to accept that the playing field isn’t level and it’s okay that I have different needs and capabilities.
Understanding ableism
If you’re reading this and are wondering “what is ableism?”, you’re not alone. Ableism is beliefs or actions that discriminate or devalue disabled people. Practical examples of ableism might be policies and procedures in workplaces that restrict the flexibility and accessibility disabled people need to work, venues without an accessible no-step entry, as well as harmful expectations about what someone should or shouldn’t do.
Internalised ableism is so hard to work through. It—and others around me spurred by their own ableism—told me I should keep pushing through my excruciating pain and bone-crushing fatigue, despite being so incredibly unwell. It told me I wasn’t disabled enough to ask for my access needs to be met. It told me I wasn’t disabled enough to use mobility aids, even when they really helped me. I was told by people around me that it’s “immoral” to use mobility aids when I’m not paralysed, that I should just push through, and that using mobility aids was embarrassing. One person even told me it was the reason I had no friends.
All of these comments have come from people who’ve said they love me. In some cases, people speaking out of concern: they know the stigma and may want to protect us, or they may not want to accept our disabled reality. But the only way we can fight stigma and ableism is to actively challenge it – ableism helps no one but harms everyone.
In some extreme cases, internalised ableism can also lead to abuse, which appears as neglect. It might begin as a ‘slow burn’, where the disabled person experiences neglect from the people around them, which can impact their care. This might look like being left alone in the house for long periods of time, being denied access to medical care or equipment, or not facilitating adequate care. Alternatively, it can also appear in how someone is treated, like being forced to do things beyond their capacity and experience pressure to push through, even if it leads to harm. This can lead to breaches in human rights, as well as have a huge impact on a disabled person’s physical and mental wellbeing.
Disability and dating
Romantic relationships can be even more challenging for disabled people. There’s a perception that disabled people don’t date, love, or have sex and while this might be true for some, many disabled people are seeking romance.
For people in an inter-abled relationship (where one partner is disabled and the other isn’t), things might have to happen differently, like thinking more about accessibility. It’s also common to be asked super intrusive medical questions or have the non-disabled partner held up as a “hero” for dating someone with disability.
It can be hard: especially if one partner becomes disabled during the relationship, and the other struggles to understand. Sometimes a partner won’t be able to understand because it’s not their experience, but that doesn’t mean we can’t accept their experience. It’s important to communicate, understand a partner’s needs, and work through challenges together.
Tips for supporting your disabled loved one
It’s important to remember that everyone’s experiences are different. But there are a few things that can help your disabled loved one feel more supported. This includes:
- Learn about their disabilities. Read articles and books, listen to podcasts or watch content made by disabled people. Follow people online with the same disabilities, and do your best to really understand. Be careful about where you’re getting your information, because there is a lot of stigma and misinformation, especially when it comes to invisible disabilities, chronic illnesses, mental illness, and neurodivergence. If in doubt: talk to your loved one. No one knows their experience better.
- Advocate for their access needs. Nothing says disabled love like accessibility. Everyone has access needs, some are just more catered for. Advocating for access needs might mean things like calling up a restaurant to make sure it’s wheelchair accessible or making sure there are places to sit if your loved one can’t stand long. It’s the little things. And if you’re not sure, ask!
- Be supportive of change: It’s important to remember bodies change and so do access needs. Embrace these changes with kindness—whether it’s supporting your loved one to use mobility aids, take breaks, or use any kind of assistive technology that makes life easier.
- Be aware of control: There is a fine line between care, protection, control and abuse – and it’s important we’re aware of it. When you’re disabled, especially if you were born with your disabilities, the people around us who care for us might worry when we try new experiences, like dating, moving out of home, or taking on a new job. Worry is normal, but control and gatekeeping are not. Disabled people deserve to have choice and control. We should be supported to live a life of freedom and dignity, centred on our human rights. However, many disabled people experience controlling behaviour in many ways, including physically, medically, emotionally, and financially. Sometimes, it can be unintentional – but that doesn’t make it any less harmful. Accessing individual counselling with someone who specialises in disability can help you build healthy relationships, set boundaries, and access support if your rights and wellbeing are at risk. You are not alone: there is always help.
Zoe Simmons is an award-winning disabled journalist, copywriter, speaker, author and advocate. She writes to make the world a better place. You can find out more about Zoe on her website, or follow her on Facebook, Instagram, Twitter, LinkedIn or Tik Tok.
Whether you’re disabled or your loved one is, it can be hard navigating the challenges of life and disability, so it’s important to seek help when you need it. Family and couples counselling can help people understand each other’s points of view in an empathetic and non-judgemental space.
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