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The Ongoing Negotiations of Living Life with a Disability

Living one’s daily life with a disability can start to feel like an ongoing business transaction.

By Rachel Kolb


(Photo: Karen Bleier/Getty Images)

The line of thinking often goes like this: Disability is expensive. People with disabilities are in the minority, so costs could be better spent on projects that benefit more people. What’s more, retrofitting spaces and processes for accessibility is a hassle. Whenever accessibility provisions are granted, the person with the disability ought to be profoundly grateful others took the trouble to make it happen. And, anyway, if you’re requesting accessibility services, do you really need them? Couldn’t you just do without?

Even more than a quarter-century after the Americans With Disabilities Act (ADA) was passed into law, it’s dizzying how deep some Americans’ misunderstanding of disability is, and across the political spectrum. Just take a glance at the news. From the current administration’s fresh attacks on disability recipients to the Washington Post editorial board’s mischaracterization last week of people with disabilities as system abusers, current political discussions betray a broad lack of understanding of how to engage people with disabilities. We also tend to conceptualize disability only in terms of dependence, welfare, and Supplemental Security Income, rather than think about its relationship to other things, too, including what it means to navigate a society with institutions and policies not created for you — or, at least, not created with you in mind.

To paint a clearer picture of what I mean, consider access. Perceptions of accommodations requests often don’t take the form of overt hostility or declamation; rather, they can simmer under the surface, lurking in the background of otherwise polite accessibility negotiations. Indeed, that’s what accessibility conversations are — negotiations. Careful negotiation skills can act as the fulcrum in the balancing act of enabling oneself to function in the world. As a person with a disability, come across too strong when requesting a specific accessibility accommodation from a new organization and you risk alienating other people who might not know how to deal with your request. (After all, individuals with disabilities are supposed to be docile, kind, submissive, always grateful. Our culture still lacks a coherent image of disability as leadership.)

But, on the other hand, fail to make your request strongly enough and you risk disempowering yourself, becoming stranded among the waves of other people’s reluctance or preconceived notions. Either way, you could risk winding up without the services you need.

Around and around these accessibility conversations go, always skirting around the central issue: Yes, this is going to cost money. Yes, it’s also required by the ADA, under the rights that all people have to access physical spaces and interactive events. All the while, another insidious thought may arise: Yes, I am a hassle, and I need to provide some benefit to make up for this. Especially with smaller community groups, charities, and institutions not accustomed to providing access (or not accustomed to planning for access within an already-tight budget), making accessibility requests and explaining your reasons for them can feel like a strain, even if the other people in the conversation have the best intentions.

In other words, living one’s daily life with a disability can start to feel like an ongoing business transaction.

This speaks to another key question: Is someone’s life a business negotiation, involving costs and benefits and the upsides and downsides of providing access whenever it’s needed? Or is it just that, a life, a perspective, unique and capable of contributing if it can just figure out the right way to participate? As a deaf person who faces an ongoing maze of conversations about how to gain access to American Sign Language interpreters in various institutional spaces, I believe in the latter. I also believe that most people would say so, too, at least in theory. In a perfect world, this thread of conversation sometimes goes, without constraints on our scheduling, staffing, or budget … yes, we absolutely do believe in providing you access.

We don’t live in a perfect world, and resource constraints are indeed often a reality, but this doesn’t change the fact that accessibility is more commonly an afterthought than an integral part of institutional planning. Hence, when a person with a disability comes along and asks to be included, that person can sometimes be seen as a hassle and an expense. The institution may never have imagined their existence to begin with. I know this, and other people with disabilities know this. Start an accessibility conversation with a new institution, especially one with limited experience with disability, and you are starting a reaction chain that either could lead to greater education and understanding or could culminate in an ongoing wrestling match about who should pay for what, and why. For this reason, I hold my breath before making accessibility requests within contexts I suspect may be less well-versed in disability.

But this doesn’t mean things can’t be done right. Institutions that visualize disability and accessibility as integral parts of our world, and that do the advance work to anticipate and plan for it alongside their other daily operations, display their core belief in the importance of inclusion. Their planning may require more time, imagination, and also strategic budgeting, but it demonstrates their commitment to bringing different bodies and perspectives into their spaces. It’s also an act of good faith that, after all, anyone deserves this consideration, anyone might someday need this.

So why do any of this? The case for accommodations and inclusion doesn’t rest on cost-benefit analysis, even if people with disabilities can become far too accustomed to encountering this sort of rhetoric. It doesn’t rest on the potential tangible payoff someone could bring to a particular setting in exchange for inclusiveness, nor need it draw upon self-congratulatory notions of charity and do-gooder-ism. The payoff of inclusion, as it exists, is far more intangible: It exposes our commitment to our ideals about who we are as a society and as a community. It exposes the extent to which we are willing to include, value, and learn from difference. It creates opportunities for unexpected insights into how alternative embodiments encounter the world.

Frankly, it shows how much we — all of us — have yet to learn about each other’s perspectives and challenge our own.

We live in a political time where public resources are only becoming more limited, and where the business-centered rhetoric of profit, domination, and deal-making can overshadow other social ideals. In these times, it’s already becoming too easy to see disability merely as weakness and disadvantage, and also to make policies and institutional decisions that take the needs of the majority as “good enough” for everyone else. As a result, it’s vital to continue discussing the implementation of accessibility planning, not as an add-on or an afterthought but as a core part of how we see ourselves and others.

At all levels of society, continuing to look for more proactive ways to plan for disability will indeed be a negotiation: not necessarily of the reasonableness of other people’s requests, but of the reasonableness of our own continuing commitment to honing and re-imagining our world.

This story originally appeared in New America’s digital magazine, New America Weekly, a Pacific Standard partner site. Sign up to get New America Weekly delivered to your inbox, and follow @NewAmerica on Twitter.