I am getting quite frustrated with leading U.S. disability nonprofits platforming these parent-led initiatives that focus exclusively on parents providing their child's accommodations with absolutely no mention that this is to be a last resort when a program is not following the law and a family still wishes to be included. I'm seeing disability nonprofits posting on social media about parents spending extensive time modifying materials for extracurriculars and providing inservice trainings about their child's disability, and this is being promoted as normal and encouraged. I'm seeing things like "tips for success at summer camp for kids with [disability]" that focus on the parent providing all of the accommodations and modifications as well as the general staff training around disability, not just the training specific to their child's equipment and methods.
Of course I am not going deny the reality that disabled folks and their friends and family frequently end up providing their own accommodations, nor am I going to suggest that any one individual should stop doing this in any particular situation. Of course people make the informed choice every day to provide their own accommodations so they can be included somewhere, and it would be ridiculous to suggest that someone forgo every service or experience just to make a point. All of us who have a less-common need or someone in our lives who does are all-too-familiar with the idea of "having a super low bar" and frequently settling for things that really aren't ideal.
And of course it's a normal and natural part of interdependence that most disabled folks who go into a restaurant or museum with family or friends are going to have those people provide most of their accommodations such as reading things or reaching things rather than requesting that the staff do it. The point here of course is not that friends-and-family-as-accommodations is necessarily a bad thing.
What's missing here though is that so many of these resources don't once mention that if you're in the U.S., and you're dealing with a business open to the public, the place most likely has to provide accommodations. There are only a few rare exceptions. Most businesses are not aware of these obligations, and frequently will ask someone to bring their own accommodations. They e-mail back someone stating they need to communicate in writing and say their business only uses the phone for that ("you'll need to have someone make the call for you then"). They state they don't have screen-reader-accessible versions of the forms they haven't updated in 20 years ("someone can help you fill it out").
The other thing with the ADA is that enforcement is difficult. In most cases, what people do is go somewhere else or provide their own accommodations. I don't begrudge anyone for not formally pursuing ADA violations.
However, I also am a behavior science person. I can tell you with a high degree of certainty that most people are not in the habit of just doing whatever the hell they want until someone in authority stops them. Most people overall want to do what's good and helpful and prosocial, but also tend to do what's normative and what's been modeled for them.
If someone works at a summer camp and their experience is that disabled kids have their parents provide all the accommodations and train their staff, they have no reason to understand that this is unjust and shouldn't be happening. There is no reason most people would know that the ADA obligates any public place to spend some degree of time and money to put accommodations in place -- even if they looked at most of the ADA materials put in place by the government and nonprofits, these are mostly about structural access requirements and they're going to believe that the ADA only tells places to have wheelchair ramps and lowered water fountains. When a parent comes in and makes a request under the ADA to have the camp provide a low-cost or no-cost accommodation such as having their staff watch some YouTube videos about accommodating the disability and providing large-print materials, this may be the first time the camp director has had anyone make this type of request, and the camp director may in good faith tell the parent that that sort of thing is provided by parents. If the camp director follows disability organizations on social media and is seeing them post content about parents modifying the materials for summer camp with no mention that the camp is obligated to do this...ugh.
So again, in this situation I wouldn't begrudge the parent who makes the materials and sends their own aide for a weeklong day camp on their child's favorite topic rather than not attending or attending but being excluded. As much as I know that people often end up providing their own accommodations, I do absolutely encourage parents to initially send in ADA letters stating what is needed and reminding the organization of their obligations, and to model this human right for their children. I encourage families to push this to whatever extent is safe for their family -- especially when dealing with a well-funded organization with a high degree of community exposure -- by doing things such as contacting their regional ADA Technical Assistance organization and forwarding the e-mails clarifying what the organization's obligations are.
If you see these posts, please do some advocacy by leaving them a polite comment that they need to remind parents that summer camps, sports teams, music schools, YMCAs, etc. (basically everywhere except for religious organizations performing religious functions) are covered under Title III of the ADA, and they should be providing these accommodations.
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