I have Cerebral Palsy and I Tried the Cerebral Palsy Foundation’s New Fitness App

March is as I’ve been repeatedly made aware Cerebral Palsy Awareness Month–please take a moment to pause and simply be aware of my existence–as a result, there have been awareness campaigns (usually in the form of patronizing memes) that pop up in my social media feeds.

There has been one that I was particularly interested in, though. The Cerebral Palsy Foundation announced early in the month that they would be launching the CPF Challenge, a fitness app which would include modified exercises for various mobility needs.

I have written before about my own difficulties in finding accessible fitness options and about how disabled people are used as examples of the things that will happen to nondisabled people if they don’t maintain healthy lifestyles. So I was cautiously excited about this app.

Video Description: The video features both a personal trainer and two individuals with cerebral palsy demonstrating various interval style exercises. There is text that advertizes the CPF Challenge and it’s daily 7 minute workouts.

I was only cautiously optimistic because the app was not simply something to fill a need for more accessible fitness options but also a fundraising exercise for the Cerebral Palsy Foundation.

I have been sceptical of the CPF ever since it launched it’s deeply patronizing and seriously ill-advised “Just Say Hi” campaign. A campaign that they still advertise on their website.

The CPF Challenge is supposed to be undertaken over 21 days with participants joining online teams to compete to raise the most money while doing the 7 minute workout every day.

Beyond the fact that my feelings toward the CPF are ambiguous at best and I’m not particularly bothered about raising money for them, the three week timeframe has me concerned.

This is clearly a fundraising initiative for them so I worry about the long-term usability of the app. While I hope that it will still be possible to access workouts after the campaign has run its course, the CPF has not confirmed this. This is also the sort of thing that could be useful long term and benefit from ongoing updates but it is also unclear whether the CPF are going to continue investing in it as a tool to help people stay fit rather than a simple fundraising tool.

I downloaded the app yesterday as the functionality only started on the 25th in keeping with its function as a fundraising tool. I immediately hit a problem, despite the fact that it was the 25th of March yesterday and it was also the day I downloaded the app, the app was out of date and was convinced that it was still the 24th and would not work.

I was so confused by this that I didn’t trust my own knowledge of the date or the calendar on my computer. I actually googled the date just to confirm that I was, in fact correct. After receiving confirmation I checked the app store for an update which there was. My app was finally ready to use.

It is clear just by opening the app that it’s primary function is as a fundraising tool and not a fitness app. This is the opening screen.

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Image description: Home screen of the CPF challenge app. It has blue text on a white background and is separated into three sections. The top is for personal workouts completed while the second is for workouts completed by the user’s fundraising team. Both sections include a workouts completed status bar and a fundraising status bar. The bottom third is topped by a large Fundraise Now button which is followed by options to look at achievements and a challenge calendar. The very bottom has a blue button with white text that reads “begin today’s workout”

In order to make the workout accessible, users have to go to the workout library and unselect the options that are inaccessible.

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Image description: CPF Challenge exercise library that lists various interval exercises and a toggle on the right to indicate whether the user can do that particular action or not. On the bottom is a blue button with white text that reads “review all exercises”

In case you aren’t familiar with what the exercise name means you can choose to review all of the exercises which leads you to a silent video run through of them all with buttons that let you say yes or no to each. There is no audio description of the exercises in the exercise library.

While the app simply categorizes the exercises as a yes or no, I took a slightly different approach in which I classified them as

Yes, I can do that

No, I can’t do that

I think I can do some approximation of that without dying (We’ll see if I was right about that or not)

One of the first things that I noticed is that there are significantly more standard exercise options than ones that have been modified to consider different mobilities. Only 14 out of 57 exercise options are classed as “modified”. While I was certainly able to select yes or a tentative maybe to options from both the standard and modified offerings it was disheartening to see how few were specifically geared toward disabled bodies. And while it is entirely possible that other disabled users will like me find accessible options from within the standard list, it would have been nice to see more modified options. It’s also not clear whether CPF expects there to be crossover because all of the standard exercises are demonstrated by the nondisabled coach. Neither of the disabled demonstrators show anything but the modified ones.

It is, therefore, unclear how much actual functionality CPF expects disabled users to get from the app because not even all of the modified options were accessible to me and I expect that I won’t be alone in that. So disabled users are by design offered fewer options which is disheartening.

It is day two of the challenge and I have now done the 7 minute workout twice and I have some early observations (I might do a follow-up after the full 21 days let me know in the comments if you’re interested in that).

The workouts are 7 minutes which is broken down into 12 different exercises.

The workout is surprisingly effective for all that it is only 7 minutes. My thighs and calves are still in pain and I was even reticent to do today’s set because I was genuinely stiff from yesterday (yes, I know I’m really out of shape). Hopefully, I build up a resistance soon or I’m going to have to quit from the pain.

One thing I really wish was different and makes the workout inaccessible is that there is too little time between exercises. I am able to transition from a standing action to one that requires me to lay on the floor (and vice versa) but I can’t do it quickly. Particularly today because on top of my general lack of coordination I was stiff and sore from yesterday’s workout. I actually sat out of an exercise because I didn’t think I would be able to get down on the floor, do the action and get back up in the time allotted. The workout would be improved by doubling or even tripling the interim time (or by offering it as an option).

So far both workouts were identical but I expect that to change in the coming days as I did set more than 12 activities as things I was able to do.

I am unfortunately not optimistic as to how much functionality physically disabled users will get out of the app. I get the feeling that the CPF challenge is more something to be done on behalf of people with cerebral palsy than by people with it. The modified options feel more like a publicity stunt than something functional in its current form.

The app concept does have potential if they decide to continue investing time in the app by adding more modified activities, having the workout time lengthened to consider slower less coordinated bodies and showed the disabled presenters doing more of the demonstrations, showing where even the standard activities might be accessible.

I certainly hope that the Cerebral Palsy Foundation see this as a genuine opportunity to create something that could be useful to disabled people and fills a real need for more affordable and accessible fitness options. I hope that this isn’t just a publicity and fundraising campaign.

If you liked this post and want to support my continued writing please consider buying me a metaphorical coffee (or two or more). Donations help me keep this blog going and support my ongoing efforts to obtain a PhD. Or if you just want to support an actual person  with cerebral palsy in Cerebral Palsy Awareness Month.

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In Defense of the Radical Idea of Letting Disabled People Exist in Public Without Comment

Today, I was reading a blog post by Dominick Evans called Don’t “Just Say Hi” to Me…Just Fuck Off Instead. He’s referencing the Cerebral Palsy Foundation’s ill advised campaign to combat people’s discomfort around disability by inviting them to engage with disabled people and “Just Say Hi“.

In my experience people don’t have trouble saying hi, my friends do it all the time, shockingly even the ones who aren’t disabled happen to manage it. The problem with campaigns like “just say hi” is that they lack context. You should really have a reason to talk to someone. The existence of disability in your general proximity is not a reason to talk to them. Not that this stops complete strangers from doing so.

Random people have been doing this to me in public since I was a child.

Let me make this very clear adults (most often men) have felt perfectly comfortable coming up to me and saying “hi” since I was a child. Almost exclusively when I was alone (walking home from school, perusing books in the library, etc), yes there is a serious creep factor going on.

These interactions have followed me into adulthood and the creep factor has diminished but not disappeared. These interactions are entirely fixated around the fact that I am disabled. They have nothing to do with me as a person. They invariably involve probing questions about my body and involve such enlightened questions as “what’s wrong with your arm” or “what happened to you?”

The answer to both is “nothing” by the way.

Believe me people have no problem interacting with disabled people for the very reason that they’re disabled. I also assure you that when they do this, I don’t feel included. I feel like someone is very publicly pointing me out while chanting “Different, Different”. Talking to someone just because they’re disabled is not progressive it’s actively hurting people and contributing to a sense of entitlement from nondisabled people.

As Evans notes in his piece

Having a disability takes away most people’s access to privacy. The world truly has little concern for what is going on in our lives as disabled people. Instead there is this innate curiosity about us, which makes it impossible for most people to not say something.

This is the real issue that the Cerebral Palsy Foundation and any other organization should be tackling. The fact that disabled people are not seen as being entitled to personal privacy. The fact that our bodies deviate from the norm seems to give people the idea that they have the right to ask us probing personal questions and they don’t take refusal very well.

Perhaps this is why Evans says that despite his dislike of these interactions, he tends to comply with a smile.

In my experience attempts to deflect just lead to more probing questions. An outright refusal to comply is met with shock and frustration. It also in my experience rarely if ever leads to them backing down because as I mentioned these people feel entitled to my personal information. They usually respond by attempting to shame me by saying something along the lines of “I’m just trying to learn, don’t you want people to be educated”

The fact that I have been trying to teach them that I have the right to exist in public without being accosted is inevitably lost on them.

So rather than telling people to “just say hi” a more appropriate lesson would be to make it clear that disabled people should have the right to exist in public without comment.

I am not suggesting that people ignore issues important to disabled people but rather learn to distinguish between discussing disability in general and needing to know someone’s personal information. It is time for people to learn how to discuss disability only when it is relevant.

The existence of a disabled person in public whether it be someone just walking down the street, shopping in the mall or even being the contestant on a TV talent show does not constitute relevance.

Engaging with disabled people just because they are disabled is dehumanizing.

Unfortunately, that kind of shift in conversation requires a social shift in how society views disability, which is still very much as a spectacle.

Ultimately, initiatives like “just say hi” are lazy faux attempts at inclusion that actually reinforce the status quo, while allowing nondisabled people to feel like they’re helping.

So please, if you don’t know what to say to a disabled person, it’s more likely than not that you have no business talking to them in the first place.

If they actually happen to be a peer (classmate, coworker, etc) and you haven’t figured out that you can talk to them just like anyone else then there’s probably no hope for you anyway.

Learning to talk about disability only when it’s relevant and in a way that doesn’t reduce the experience of disability into something that can be explained by a single person, will do a lot more good than expecting me to be happy that you’re talking to me just because you noticed that I’m different than you.