The disability discount

The Disability Discount: We Are Not Your Free Focus Group

By Anthony Corona
Founder of the Sunday Edition Family of Podcasts

It seems like I cannot open my email or scroll through any of my social media feeds these days without encountering another request aimed at members of the blind and low vision community.

Fill out this survey.

Share your experiences with technology.

Tell us about your mental health.

Evaluate our product.

Test our website.

Review our college program.

Join our focus group.

Try our prototype.

Help us refine our idea.

And let me be clear. I genuinely appreciate organizations, companies, researchers, developers, and entrepreneurs who want input from the community they are attempting to serve. Involving disabled people in the design process is almost always better than building something in a vacuum and hoping it works.

The problem is not that they are asking.

The problem is how often they are asking, what they are asking for, and what they are offering in return.

What once felt like an occasional request has become a constant stream of outreach. Some days it feels as though every other email, Facebook post, listserv message, or LinkedIn update is another appeal for blind and low vision people to donate our time, our expertise, our experiences, and our labor.

And yes, I understand that because I am active in this community as a writer, content creator, producer, advocate, and podcast host, I am likely exposed to more of these requests than the average person.

Even so, it has reached a point where I find myself asking a simple question.

Does anyone realize how exhausting it is to constantly be asked to educate everyone else?

We do it all day, every day.

We do it at work.

We do it in school.

We do it with family.

We do it with friends.

We do it with rideshare drivers.

We do it with airline employees.

We do it in hospitals and medical settings where, quite frankly, you would expect a greater understanding of disability in the first place.

We are constantly explaining, correcting, demonstrating, teaching, and advocating.

Then we come home, open our inboxes, and discover another request asking us to spend another hour explaining ourselves.

Many of these opportunities come wrapped in the language of inclusion and empowerment. Some offer a token twenty five dollar gift card. Others promise entry into a drawing for one of a handful of gift cards that may or may not ever materialize.

Too often, however, the message is essentially the same.

We need your expertise.

We need your lived experience.

We need your feedback.

We need your time.

But we do not necessarily believe those things are worth paying for.

Our time is valuable.

Our time is important.

Our time and talent are worth paying for.

Let me repeat that for the cheap seats in the back.

Our time and talent are worth paying for.

What many organizations fail to recognize is that they are not simply requesting opinions.

They are requesting labor.
They are requesting consultation.

They are requesting usability testing.

They are requesting subject matter expertise.

They are requesting quality assurance.

They are requesting lived experience that cannot be replicated in a laboratory or generated by artificial intelligence.

That has value.

Real value.

And it is particularly troubling when these requests are directed toward a community that remains historically and statistically underemployed.

Many of the very barriers these organizations are studying are the same barriers that prevent disabled people from obtaining meaningful employment opportunities in the first place.

Yet somehow we continue to normalize asking disabled people to perform work for little compensation, symbolic compensation, or no compensation at all.

Do not get me started on the organizations and workplaces that still exploit loopholes allowing disabled workers to be paid far below minimum wage. That is an entirely separate conversation, but it is also part of the same ecosystem.

It sends a message.

It creates an expectation.

It reinforces the idea that the labor of disabled people is somehow worth less.

I do not believe most researchers, developers, nonprofits, universities, or companies are acting with malicious intent. Most genuinely want to create better products, services, and experiences.

But good intentions do not pay bills.

Good intentions do not compensate expertise.

Good intentions do not replace respect.

And I would like to say something directly to my fellow members of the disability community.

We have more power in this conversation than we sometimes realize.

Not only do we have the right to say no.

We have the right to explain why we are saying no.

Respectfully.

Professionally.

Without anger or hostility.

We can tell organizations that our time has value.

We can tell them that our expertise has value.

We can tell them that our lived experience has value.

And we can tell them that what they are offering does not adequately reflect that value.

I realize that can be a slippery slope.

I understand there are people who enjoy participating in surveys, focus groups, and prototype testing simply because they want to help move accessibility forward.

There is absolutely a place for that.

But there is also a place for drawing boundaries.

There is a place for asking better questions.

There is a place for expecting better compensation.

Most importantly, there is a place for changing expectations.

Because if we continue saying yes to every request regardless of compensation, why would the model ever change?

Organizations are not going to change the model based solely on our feelings.

They are going to change the model when enough people start having honest conversations about the value of disability expertise.

They are going to change the model when enough people politely decline.

They are going to change the model when enough people respond with a simple question.

What compensation is available for my time and expertise?

That is not being difficult.

That is not being unreasonable.

That is not being ungrateful.

That is recognizing value where value exists.

Perhaps it is time to rethink the model.

Perhaps it is time to refine the approach.

Perhaps it is time for organizations receiving grants, research funding, venture capital, development funding, or institutional support to earmark a meaningful portion of those resources for the people they are asking to evaluate their work.

If you are asking blind and low vision people to test your product, pay them.

If you are asking disabled people to review your website, pay them.

If you are asking people to spend hours discussing accessibility barriers, pay them.

If you are asking us to help build something better, pay us for helping build it.

Because inclusion is important.

Representation is important.

Community involvement is important.

But respect is important too.

And respect is not measured by how many surveys you send.

Respect is measured by whether you recognize that the expertise you are requesting has value.

The disability community has spent generations giving away that expertise for free.

Maybe it is time we stop accepting the disability discount.

Maybe it is time we stop being everyone else’s free focus group.