The Word on a Healthcare Center Form That Spurred My Advocacy

I want to share a story about how one Tweet can make a difference. A difference in the words used, the respect given to people with developmental disabilities and how families are treated by large organizations.

I recently was asked to complete an intake form in advance of an assessment at a healthcare center. I printed off the form, made a cup of coffee and sat down to fill out this lengthy document. As I came to the section related to family medical history, my eyes popped out of my head.

Sitting on my couch in 2021, the R-word appeared in a list of medical conditions that included allergies, diabetes and migraines. To make matters worse, left-handed, slow learner at school and emotional disorder were also listed – despite the fact these terms are no longer the correct terminology.

I quickly grabbed my iPhone to see if I had fallen into the 1970s. But nope, it was still 2021. Turns out the form was created in 2001 – a full 20 years ago. What’s worse? It’s still being used by a provincial healthcare organization.

After uttering a few choice words, I turned on my laptop and began searching for someone to talk to about the use of the R-word. I left voice messages and sent emails and then waited. And waited.

Online community

With my patience wearing thin, I sent out this tweet below with a screenshot of the medical conditions listed, including the R-word, tagging the healthcare organization:

Tweet: Question – What year is it? Is it just me or does this term have no place in a form in 2021?

And then the magic happened.

The tweet got noticed. Other families and individuals shared how they had also seen the R-word in documents from this organization. A couple of influencers chimed in and the reach of my tweet (and need for the organization to respond) grew.

Within minutes of my original tweet, the healthcare organization responded, saying they were taking immediate action and reviewing the documents.

The next day, the organization tweeted that the incorrect form was sent and it was an isolated incident due to clerical error.

But it wasn’t.

Having tapped into the advocacy community, another advocate did a quick Google search of the R-word on this organization’s website. Turns out it is used there – a lot.

Fast forward a few hours, and lots of Twitter conversation later, and the healthcare organization tweeted:

“We want to thank people for raising their concerns. As a result, we are currently reviewing all of our forms and web content to ensure current terminology is being used.”

Advocacy in action

The entire scenario above played out in under 24 hours. In addition to the Twitterstorm, I also had a productive one-hour phone conversation with a manager about the R-word, the trauma caused by using this word, and the ethical responsibility of healthcare organizations to be leaders in using respectful language.

Now I’m not saying that all advocacy efforts will be resolved so quickly or that Twitter is the answer to all of our problems. Rather, what’s important here is how a community, by banding together, can make a difference.

It started with reading offensive language and taking a stand, saying this is not acceptable. It wasn’t about shaming or blaming, but being clear on the fact this language has no place in 2021.

It’s about holding organizations accountable for the words they use – no excuses.  Now, this isn’t my first time advocating on a provincial level – nor will it be my last. Every success I’ve had is the direct result of three things:

• stating my truth
• holding my space
• harnessing the power of community
  

New path forward

I’m sharing this story in hopes it inspires you to advocate for the changes you want to see. You don’t need to be an influencer with thousands of followers to make a difference (I have 200 followers). You just need passion, determination and a commitment to your cause.

While I appreciate the quick response from this healthcare organization, I’m not letting go of the issue. I will be reviewing their website to ensure they hold up to their commitment of ensuring respectful language is to be used for individuals with developmental disabilities.

My family members, and yours, deserve this respect.