One of the core principles of disability rights activism is that lack of access for a person with a disability is a form of discrimination. Someone who holds a public event in an inaccessible building, or refuses to provide large print or braille materials, is not only violating the law – they are discriminating against a person with a disability. We use that word – discrimination – advisedly, intending with it to draw a direct parallel to someone operating a Whites-Only lunch counter or tacking on to their classified ad “Irish Need Not Apply”. And there is good reason for that – from the perspective of the person being excluded, there is little difference, and the less malicious intent of the person doing the discriminating does not change the nature of the exclusion.

But not every form of discrimination is the same. Civil rights law has long recognized the difference between disparate treatment – when someone engages in intentional discrimination against you because of your race, sex, orientation, disability or other protected class – and disparate impact – when an ostensibly neutral policy has a disproportionately negative effect on a specific protected class group. For example, a landlord that refused to rent to black prospective tenants would be engaging in disparate treatment discrimination. In contrast, a public housing authority that only awarded low-income housing tax credits – used predominantly by racial minorities – only awarding allocating those credits for use in predominantly black inner-city neighborhoods (leading to residential segregation) might be disparate impact discrimination.

Disparate impact discrimination, which can occur without ill intent on the part of the person discriminating, is not unheard of in non-disability civil rights law – the Civil Rights Act of 1964 has long recognized it and the Supreme Court ruled on a case earlier this year affirming the Fair Housing Act covered this kind of discrimination.

Social justice theorists often refer to disparate impact as institutional discrimination. To make things less clunky, let’s refer to disparate treatment as malicious discrimination and disparate impact as institutional discrimination.

Institutional discrimination is written into the Americans with Disabilities Act to a much greater degree than in other civil rights statutes, which generally require some form of class action litigation or statistical analysis showing widespread negative results before a disparate impact claim can be made. The ADA, in contrast, allows for an individual redress of institutional discrimination – the right to demand a reasonable accommodation from an employer, program or place of public accommodation.

The requirements of the ADA do not only prevent covered entities from refusing to hire or serve a person with a disability out of an irrational prejudice or whim. They require those hiring or operating a business or organization to actively work to make themselves accessible, even if it involves changing practices or architecture that were previously thought to be neutral. Under the ADA, not discriminating is more than just stopping a refusal to hire or serve a person with a disability. To truly not discriminate, one must take steps to remedy the institutional barriers that exist – from stairs to inaccessible communication methods – in a place of business. And unlike other civil rights statutes, an individual can assert the right for a business, school or program to make those changes, without having to prove that they impact a larger group of similar people to do so.

In many ways, that makes the ADA one of the most progressive civil rights laws this country has ever passed. It also means that sometimes, figuring out the right ways to handle institutional discrimination we see or face in our day to day life can be more difficult. After all, for a person to stop engaging in malicious discrimination all they have to do is…well…stop doing it! It’s easy! Getting them to decide to do the right thing may be more difficult, as is figuring out what to do when one suspects malicious discrimination but cannot prove it, but from the perspective of the discriminator, stopping malicious discrimination is comparatively easy.

Comparatively easy. Compared to what, you may ask?

Compared to stopping institutional discrimination. Someone engaged in institutional discrimination may not be aware of what they are doing until told. They may require convincing, or point to superficially valid non-discriminatory rationales for why they are doing what they’re doing. Sometimes, as with the failure to hold an event in an accessible location, they have no real excuse for their ignorance. Twenty-five years after the ADA, you’d be hard pressed to argue that any organization holding a conference or other activity open to the public should be failing to recall the basic accommodation of “hold this in a place wheelchair users can enter”. But there are other kinds of institutional barriers that an event organizer might legitimately not have heard of – and when those come up, it may not be possible to remedy them right away.

Conflicting Access Needs

A year or so ago, the National Council on Disability held an event in Atlanta on the school-to-prison pipeline and disability issues, focused on the issues impacting minority students of color with disabilities. The event was well attended and featured a wide variety of interesting and informative discussion on an issue that too often goes overlooked.

There was just one problem: the sound system was slowly killing me.

I don’t know if it was crappy microphones, feedback on the speakers, or demonic possession of the venue but every other person who spoke was accompanied by the dulcet tones of a horrific high-pitched screech. To make matters worse, what was head-splitting agony for me was only a mild annoyance to the other, almost exclusively non-autistic, people in the room. After an hour of the administrative staff trying and failing to fix the feedback, I asked if we might consider turning off the microphones altogether.

“We can’t – the CART transcription is being done remotely, and if we turn off the microphones the Deaf and hard of hearing Council Members and attendees won’t be able to follow the event.”

Meeting my access needs would result in a lack of access for someone else. I tried taking breaks, walking in and out of the room, pacing back and forth in the hallway, listening from across the hall, but nothing worked. By the afternoon, I had no other choice but to make an early departure.

You could very easily imagine how this situation could have played on social media.

“The National Council on Disability made it physically painful for autistic people to be in the room at their event!”

“NCD’s school-to-prison pipeline event didn’t accommodate autistic people!”

“NCD forced its autistic member to leave its school-to-prison pipeline event!”

“NCD tortured its autistic member out of the room!”

All of these statements, with the possible exception of the last one, are technically accurate. But in an important way, they aren’t honest. Figuring that out would be nearly impossible for the average person hearing about the situation second- or third-hand, who wouldn’t necessarily know about the conflicting accessibility issue. This is part of why resolving single cases of inaccessibility via public campaigns is so difficult, and why advocacy organizations typically look for patterns of behavior or specific policies to focus on, to ensure that a problem is systemic in nature and requires pressure rather than education to rectify. Sometimes access is harder than it looks – and while proper planning should catch things like buggy speakers and microphone feedback before the event starts, not every access problem can be fixed in the moment on the spot.

To take another example, at the Keeping the Promise Summit, convened by the Autistic Self Advocacy Network, Self-Advocates Becoming Empowered and the National Youth Leadership Network, autistic activists came together with activists with intellectual disabilities to come up with a unified definition of what is and what is not Home and Community Based Services (HCBS). The resulting document served as one of the inspirations for the very impactful Center for Medicare and Medicaid Services HCBS Settings rule, now transforming state service systems across the country. But it almost never happened.

SABE recommended a moderator for the event that they knew and respected. But when the event opened, most of the autistic delegates in the room found the person intolerably condescending. “She’s talking down to us,” many of our representatives complained to me, and asked me to confront her about our feeling that she was preventing the discussion of more complicated topics. With great indignation, I did so – only to learn from one of SABE’s leaders that many of the delegates with intellectual disabilities needed the moderator’s approach of repeating each topic under discussion in extremely plain language.

Later during the summit, the agenda called for us to split into small groups to talk about the dimensions of community living in more detail. Near the end of lunch, SABE’s leader came up to me. “We need to stay in a large group session – our members have trouble keeping track of the discussion in small groups. They go too fast!”

“Hang on a moment! We put small group discussions on the agenda specifically because many of our people feel uncomfortable speaking up in a large group format. If we stay in the large group, a lot of our people won’t know when it’s okay to talk and so won’t get a chance to participate. If you cancel small group discussions, you’re not respecting our access needs!”

What followed was a rather fascinating sight – the Presidents of North America’s two most prominent self-advocacy organizations stood in the center of the room yelling at each other. In that moment, I am certain we each saw in each other everything that had frustrated us all our lives.

I saw in him the tendency, very common then and still present today, of many in the Intellectual and Developmental Disability (I/DD) community to look at autistic people without intellectual disabilities as not really disabled, and thus not necessary to accommodate or think seriously about the access needs of. I’m sure he saw in me the many erudite experts whose jargon and unwillingness to explain themselves in simple terms were denying people with intellectual disabilities the tools they needed to have more than a token seat at the table. We were both loudly demanding our rights all over each other.

At the end of it, we managed to talk the situation through and kept the small group discussions – but dispatched several self-advocacy organization leaders to circulate among each of them to make sure everyone understood what was going on and that the pace was not moving too fast. We ended up working very closely together many times in the years to come, and are still in touch today.

Both the ASAN and SABE representatives could easily have gone home after that event loudly proclaiming that the other side was full of bastards that didn’t care about their access needs. That came very close to happening. But it didn’t, because we were both more committed to figuring out a middle path that would be imperfect for both of us but allow some degree of access for everyone in the room.

After the event, we kept the commitment by coming up with a modified means of communication that involved Skype calls with both voice and text components, to account for the discomfort SABE representatives had with text-based communication and the similar discomfort ASAN’s representatives had with conference calls. That system was definitely more time-consuming and cumbersome than I would have liked. But without that kind of creative back and forth to come up with imperfect solutions, the Keeping the Promise report would never have existed.

Does that mean we shouldn’t assert our accessibility rights? Of course not – after the incident in Atlanta, I made sure that future NCD events had a working sound system free of static, and strongly expressed my frustration with the prior event being inaccessible to me. Does it mean that people should only pursue official legal investigations as redress to institutional discrimination? Probably also no. Most people don’t have access to those means of justice, and they can be costly, time-consuming and ineffective. But it does mean that we should look for patterns of behavior before calling out someone accused of institutional discrimination as a bad actor, callous to the exclusion they are causing.

This is part of believing in institutional discrimination – believing that it is something that takes time and effort and creatively to fix, and that even good people can struggle in that process. Particularly when one is asserting an access need that is new and unfamiliar, it can take time to figure out a way to meet it. At times, it may be impossible to be accessible to everyone all the time right away. Figuring out a way to acknowledge this while still maintaining constant pressure for as rapid as possible a solution is one of the central dilemmas of disability advocacy.

Managing Undue Burdens

I remember a local autistic activist organizing a one day film festival approaching me in an extremely distressed mood. He had realized that while they had put in place captions and were prepared to make an American Sign Language interpreter upon request for the event, they had just realized that they had no plan for audio descriptions for each of the several movies they planned to show throughout the day. What if a blind person showed up? Should they should cancel the event?

We spent some time talking, and eventually worked out a few strategies recognizing that professional grade audio descriptions perfectly synced to the movie’s timing were probably beyond the abilities of a local self-advocacy group’s film day. If requested, another attendee could be present to describe uniquely visual content to a blind attendee or a description of it could be e-mailed in advance. Ultimately though, I explained that the ADA generally requires that an accommodation request be considered in light of the resources of the group it was being made to. That’s why it’s called “reasonable” accommodation – the extent to which an accommodation is or is not reasonable is dependent on the circumstances of those who would have to provide it.

Sometime after this, an activist campaign led by a blind comic book fan successfully pressured Netflix to audio-describe their original television series Daredevil and eventually all of their original content. This occurred after the film festival inquiry came to me, but I could very easily imagine the organizer coming to me and asking, “How is our failure to audio-describe any different from theirs?”

To that, I would likely give a simple response: “You’re not Netflix!”

The ADA explicitly recognizes something called the “undue burden defense” – the idea that employers and places of public accommodation aren’t required to make accommodations that would pose an undue burden on them – a concept that is very much tied to specific circumstances, like the cost of the accommodation, the organization’s size, number of employees, budget and other relevant factors. In short, the local film festival with the $1,500 budget has a very different set of obligations than the multi-billion dollar company.

Of course, Netflix would like to claim they’re not Netflix either – witness Uber’s continued disgraceful attempts to present themselves as ‘just a technology startup‘ and not subject to the ADA’s requirement to provide wheelchair accessible transportation. Claiming an undue burden has a justifiably bad rap – it is the first refuge of every corporate scoundrel trying to avoid even making an effort on disability accessibility.

But at some point, it matters what is and is not true. Netflix legitimately does have the resources to audio-describe all of the original content it produces, and could probably put in place a reasonable timetable to get its non-original library audio-described as well (something it has already accomplished for captioning, thanks to the litigation prowess of the National Association of the Deaf). A local autistic film festival legitimately can’t get in place audio-descriptions up to the standards blind people have a right to expect – but can make sure that captioning is available for Deaf and hard of hearing viewers, because of the more established nature of that accommodation. Most DVDs come with captioning already enabled, making this a relatively simple task. In the event that there’s a desire to show a film that doesn’t come with captions built-in, there is a sufficiently large market for CART transcription that it can be made available even on a small film festival budget.

Often, the way to solve undue burden problems is to look at ways of elevating responsibility to a more powerful actor. For example, an emerging best practice in disability employment is the creation of Centralized Accommodation Funds, which take responsibility for paying for reasonable accommodation costs for all disabled employees at a company. This means that a particular manager is never at a disadvantage for hiring an employee with a disability who has expensive accommodation needs, such as a deaf person who requires regular use of interpreters or CART transcription. Rather than come out of the budget of the operating unit with the disabled employee, a centralized fund pays for the accommodation from the company’s broader budget.

But this isn’t always possible. Many smaller businesses don’t have access to sufficient resources for CART transcription at all staff meetings, in the same way that a local film festival on a shoestring budget probably can’t commission audio-descriptions for a full length movie. That’s why the ADA does recognize the concept of an undue burden, and requires that employers and employees go through an interactive process to try and figure out an accommodation strategy that matches the employee’s need with the employer’s abilities, resources and circumstances.

It’s very easy, at one level, to look at the undue burden defense or the interactive process requirement and say they’re mere concessions to political expediency. That a perfect world’s ADA would allow someone to simply name their preferred accommodation and place all the force of law and justice on their side until it was received. And certainly, a perfect world’s ADA would have many things that ours does not. An proactive inspections and enforcement mechanism, for example, so that disabled people do not need to constantly be in the business of making complaints to get the law enforced. Or an easier means of getting people access to legal representation, a hard task even for those with means, much more so those without. But I don’t think that the perfected ADA would allow for demanding any accommodation from any entity at any time and at any place.

We don’t want an Americans with Disabilities Act that has all the impact and meaning of the East German Constitution – full of fine-sounding rights that everyone knows will never be enforced. We want an ADA that is practical, pragmatic and ultimately possible for those bound by it to follow. After all, if following the ADA was not realistic even for employers and places of public accommodation making the best of efforts, we would hardly have the capability to respond forcefully to those who willfully violate it.

Instead, let’s recognize that stopping institutional discrimination is often much harder than stopping malicious discrimination – but is still necessary and worth requiring as a matter of morality, law and justice. We should never have to compromise our access needs or give up our rights to be included and treated fairly. Yet alongside that, it is in our interests to acknowledge that figuring out how to be accessible isn’t always something one gets right the first time, and so look for opportunities to build systems of collaboration and education alongside and in addition to our confrontational advocacy, so that our enmity may seem more impactful in comparison to our friendship. If we can make our first instinct to teach, we can be even more sure of ourselves in targeting for more aggressive approaches those who deliberately refuse to learn.