Challenges in Accessing Attendant Care: Insights from a Disability Consultant

By: Andrew Gurza

I have been living in attendant care/supportive housing since I was 19 years old. I am now almost 38. Over the past two decades, I have had to sign so many agreements that dictate the rules and regulations of living there as a person needing care. Unfortunately, these documents are primarily designed to protect the caregivers, and very rarely give the person on the receiving end any actual autonomy or say in how their care is delivered or by whom. The irony is that we call this “independent living”, yet we don’t have any true independence at all.  

Let me give you a real-world example: recently, my incontinence supplies were accidentally shipped to a drug store instead of my home. If I were a non-disabled person, this wouldn’t be an issue. I’d hop in my car and go get what I needed, right? But, being a full-time power chair user, going to retrieve a giant box is really hard - literally impossible for me to do on my own. So, I emailed the manager asking for assistance. She initially responded that “we can’t accommodate this”, then later offered to “make a one-time exception”. It was infuriating for me, and it’s all because restrictions are imposed on our independence in these programs in order to minimize service providers’ liability. Just take that in for a minute: we, and our independence – or interdependence as it ought to be termed - are seen as a potential problem rather than partnership opportunity. Pretty scary, hey?

If I could sit down with the policymakers who put these rules and regulations in place that govern the kind of care disabled people receive, my very first question would be: If you were disabled and needed support - what would you want? If you were in our position - no longer making policy and dismissing our reality, but living it - how would it feel to be told, “You can’t shower today because we’re short-staffed” or “sorry, we can’t accommodate you”? I promise you, not good.

The Emotional Toll of Relying on Attendant Care

I wish that policymakers recognized that using attendant care isn’t easy. There is a complex emotional component that the end-user has to adapt to when allowing someone to help you do something that other people take for granted. That is exhausting in itself, and is a skill that I am forever re-learning. I wish they understood how much of ourselves we are sharing with these workers day in and day out, and the effect that has on our mental health.

The Significance of Client-Attendant Relationships

I wish policymakers understood how important these relationships between the attendant and the end-users actually are. When the relationship goes well, these people become lifelong friends, but if it goes poorly, it can end in abuse. For example, if policymakers better understood the nuances and intimacy of this relationship, more clients would have a hand in hiring, interviewing and picking the perfect people for the job. Our programs are so understaffed that hiring standards are unsettlingly low, and meanwhile the client has no say or input in who does their care.  

Respecting the Needs and Desires of People with Disabilities

Lastly, I wish policymakers understood that we are people too – with hopes, dreams and desires. I wish they understood that our needs are not a liability, but rather an opportunity to make a significant difference in someone’s day or life. If policy were created from a disability-driven lens, one fueled with actual care, not just distanced, capitalistic ideals, they might see us as more than just a liability, and isn’t that how it should be anyway?

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Header image (frustrated man) via Shutterstock

Andrew Gurza is an award winning Disability Awareness Consultant and the Chief Disability Officer and Co-founder of Bump’n, a sex toy company for and by disabled people.  Andrew uses they/he pronouns and identifies proudly as disabled. Their work has been featured on BBC, CBC, Daily Xtra, Gay Times UK, Huffington Post, The Advocate, Everyday Feminism, Mashable, Out.com, and several anthologies. He was the subject of an award winning National Film Board of Canada Documentary “Picture This”. Andrew has guested on a number of podcasts including Dan Savage’s Savage Love and Cameron Esposito’s Queery. He has spoken all over the world on sex, disability and what it means to be a Queer Cripple. 

He is also the host of Disability After Dark: The Podcast Shining a Bright Light on Disability Stories which won a Canadian Podcast Award in 2021, a Queerty Award and was chosen as an Honoree at the 2020 Webby Awards. The show is available on all platforms. Andrew is also the creator of the viral hashtag #DisabledPeopleAreHot. You can find out more about Andrew by going to www.andrewgurza.com and connecting via social media @andrewgurza_.