“The Upside” Presents Unique Opportunity for Advocacy

This is the second article in a two-part series on "The Upside," released in theaters January 11.

The new year has just begun and several great movies have already made a big splash, including one that inadvertently addresses a very hot topic in disability advocacy – the relationship between persons with disabilities and their caregivers.

“The Upside,” staring Hollywood A-listers Kevin Hart and Bryan Cranston, is bringing the human side of disability to the forefront of discussion. While some in the disability community have questioned the studio’s use of an able-bodied actor to play the lead role, this piece doesn’t weigh in on that discussion, but instead raises an interesting point and by the end of the piece, hopefully engages, you the reader, into further action.

“The Upside” centers on a wealthy man (Cranston) who is in need of daily personal care. The relationship between the two characters is important, not just for its dramatic value, but because its portrayal can be used as a springboard for advocacy regarding the abysmal pay personal care providers receive, especially in Florida.

Cranston’s character’s circumstances are unique in that he is able to pay privately for his services and, in fact, pays very well for them. Many, if not most, individuals with disabilities that require daily personal care assistance are not as fortunate. For those, there are limited options when it comes to care. They are forced to rely on government programs in order to afford care and, with support from family, friends, faith-based organizations, agencies, etc., as well as strong self-advocacy efforts, are able to live independently. Others live in institutional settings.

As Florida Self-Advocacy Central has addressed before, Florida’s rate of pay for personal care providers is extremely low and hasn’t increased effectively for more than 14 years. As someone who requires daily care, I can attest that personal care attendants willing and able to provide quality care for the current rate of pay are very difficult to find and turnover is high. The harsh truth is that although these individuals are in high demand, they are extremely underpaid. “Pay Fair for Care” has been a part of many disability organizations’ legislative platforms for several years.

Because the focus in “The Upside” is on the caregiver relationship, self-advocates could use the buzz surrounding the movie as a springboard for action and awareness, especially this time of year as we get closer to the state legislative session in March. Perhaps attention drawn to low provider rates through this movie could serve to galvanize the new governor and legislature to appropriate funding for a much-needed increase in provider rates.

Here are a few tips your group, agency, family, etc., could use to advocate in the wake of “The Upside.”

• Encourage self-advocacy group members to use the movie as a springboard for conversations with friends and family about the provider rate crisis.

• Use the movie as a conversation starter about provider rates on social media.

• Identify an articulate self-advocate who depends on government-funded personal care and experiences the types of issues addressed above to serve as a public spokesperson for the issue.

• Identify caregivers who can speak to the impact low provider rates have on their ability to do their jobs.

• Contact local media outlets and pitch the idea of juxtaposing what life is really like for many people who depend on personal care versus what is portrayed in “The Upside.” Invite the reporter and photographer out to experience the day-to-day routine of those who depend on personal care (your designated spokesperson).

• Identify and practice relaying specific talking points you’ll want to get across during the media interview. The spokesperson can state them outright or weave them into their answers to the reporter’s questions. Talking points might include the high rate of turnover because of low pay, the fact that Florida ranks among the lowest states in provider rates, how difficult it is to find good care because of low rates, and how many people who depend on personal care are not able to live independently.

• Be prepared with credible information on the issue to give the reporter.

• National agencies might consider asking Hart and/or Cranston, along with a disabled spokesperson, to be featured in a tag following the movie credits calling attention to the provider rate crisis nationwide, or produce a PSA on the issue.

While none of these strategies may reach legislators directly, they would reach the folks who put them in office. To make headway with this issue, we must raise awareness with the public at large about the crisis.

In closing, if one is trying to be an effective advocate for change it is sometimes to our advantage to use the power of the media to assist in our efforts. Other marginalized groups have used this as an effective strategy for enacting change. Maybe we as a community should explore the option of using it to our advantage as well.

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