What does disability mean to you? I always ask this question when we do trainings about disability culture. For most people, it’s an uncomfortable question. They don’t want to say something offensive or politically incorrect. For me, a disabled individual, it makes me ponder the constant struggle between burden and entitlement. Most disabled persons, when consciously conceptualizing how their disability fits into their identity and life, struggle with the balance of feeling like a burden and feeling entitled to accommodation and help.
At least for me, the initial reaction to my own disability was fear of being a burden on others. I was worried that them having to walk slower, change a location to someplace closer, ensuring accessibility in a venue would be seen as too much a bother and they would just not want to hang out with me because it was too much hassle. Therefore, I spent a lot of my life concerned that I’d lose friends and opportunities by inherently needing certain things. These thoughts weigh heavily on a young child. Adolescence is already filled with internal turmoil and insecurities (I do not recommend being a teenage girl if you can help it), so having the added worry of being seen as less or unworthy because you’re disabled just compounds on that.
This constant fear is incredibly isolating and can become a self-fulling prophecy. Sometimes you’ll just say no to an outing to avoid a possible accessibility or accommodation issue and miss out on great experiences and bonding moments. Not to mention, after a pattern of this, friends may just assume you don’t want to do things with them and stop inviting you anyway.
I’ve never felt true freedom like the moments when I’m out trying new things or on new adventures not worried about these possible issues. When I’m accompanied with a person or people who I know will stand by me no matter what and willing to help me accommodate without being frustrated or exasperated it’s the highlight of my day, maybe my week or month. Just recently, a good friend of mine had a birthday and a mutual friend was planning a surprise party and inviting about 15 people. He invited me and was kind enough to say, “We’re thinking of having it at “X location” but would it be better if we had it at “Y location”? In fact, “Y location” was much better for me and I voiced this and he arranged it without any complaint. I felt and still feel so touched that he made this change to include me and for me to have a good time with everyone on this special occasion. The look on our friend’s face when he saw the surprise was priceless and I’m so thankful I was given the opportunity to witness it. (Thanks, Mark!) But, as I sat there at this location with those 15 other people, I couldn’t help but feel a pang of guilt at the change and wonder about how this may be quite inconvenient for others.
Similarly, my significant other is a long-time wheelchair user. He’s much more comfortable with his wheelchair skills as he has been in one much longer than I and had a community to help teach him techniques and basics which is something I’ve never had. The first time he and I went to Disneyland together, I was in a new chair that fit me quite differently than I was used to and that did not have a power assist as my former chair had. Therefore, I was solely relying on my arm and shoulder muscles to push me miles and miles at the Disney Resort. There were
absolutely times I significantly struggled with the terrain or hit a bump I didn’t know how to navigate and even times where I was holding on the back of his chair so he could pull me up a difficult incline with his power assist. Whenever I hit something troublesome, he was incredibly patient and would give me tips from his own experience on how to tackle the problem, even if we were rushing to catch a FastPass time. I never felt self-conscious or like a burden. At one point we even both fell over out of our chairs because he was dragging me with his power assist and we took a sharp turn and I fell and took him out with me. He wasn’t mad or upset. Once we brushed ourselves off and made sure our dings were minor we laughed about it and continued on our way happily. I cannot adequately describe how positively compassionate moments like this have shaped my own disabled identity.
On the complementary flip-side of the disabled experience, there is the question of how entitled should we feel to accommodation and accessibility. While I emphasize that a disabled person shouldn’t be made to feel like a burden for things out of their control, the line of when they’re asking for too much is fuzzy at best and, honestly, impossible to decipher most of the time. No able-bodied person wants to brazenly call out a disabled person like that out of fear of being branded as a bigot. However, I guarantee that there are those who pull on heartstrings, guilt and work the system to maximize their benefits that they didn’t necessarily deserve. While I’m in no place to cast judgement on another and what they “actually need” I’ve witnessed certain situations that made my skin crawl a little.
Who’s really to say where need turns into convenience or laziness? Of course, there are very few people, if any, that are in a position to make that designation. Especially with a disability that you struggle with on the daily, it gets easy to rely on help and not push yourself to aspire to do more and accomplish more. There are many disabilities that result in fatigue from certain activities or certain domestic tasks (like washing dishes for example) just take exceptionally longer for the person to accomplish. Justifications to say, “Well, if I do that, I’ll be really tired later.” or “It’s just more efficient if someone else does it. It’s a better use of both our time.” are easy. In fact, you will undoubtedly meet people both able and disabled who will stand by these justifications until their dying day and get mad if you challenge it. Can anyone, even the person themselves, know if they’re right?
Some people believe very deeply in the right to independence as a disabled individual. They believe that disabled people are obligated to maximize what they do for themselves without help, for themselves as an individual but also for the disabled community at large. Being overly dependent, especially when there’s another option, is seen as giving the whole community a bad name to some degree and relying heavily on help and handouts is seen as a waste of taxpayer money and taking from those who “really need it”.
On the other hand, of course, there are those disabled persons who are unforgivingly adamant that the world should be accessible to them at all times, even in extreme cases. While as a society, I believe we should be gradually moving toward universal design, where all things are designed accessible to all people, it’s clearly the harsh reality that that’s currently not the case. These individuals tend to believe they are crusaders in this push for universal design as they
aggressively fight for these changes. While these changes are usually for the better overall, the immediate detriment is also a weight to consider. Sometimes the cost of this change is extreme financially and it can also be extremely alienating as the disabled population face backlash from instances like these.
This aggressive social justice crusade can potentially go hand-in-hand with being seen as a burden. Institutions and individuals alike who deal with these situations can become afraid of dealing with or accommodating disabled people and want to avoid it entirely as opposed to warmly embracing the morality and practicality of universal design. These situations drive those entities to attain accessibility only to the minimal letter of the law and no further. It perpetuates negative stereotypes, social isolation, inherent bias and a lack of compassion.
So, what are you supposed to get from reading this rambling sociologic societal commentary? I personally hope that disabled people continue to have the burden-entitlement internal battle. I think it’s a good reminder to actively achieve this balance and not be too hard on one’s self while also not getting too comfortable and reliant. Find the people that make you comfortable to try new things and that you trust to help you in a sticky accessibility situation and live your life happily and full of adventure. Find that friend that will schedule a surprise party at an accessible venue, just so you can be included in a birthday celebration. For able-bodied people whose heads are swimming a little, please approach all situations with compassion and assume the best and not the worst of a disabled person you interact with. If you do interact with a disabled jerk, understand that’s not representative of a whole, and the disabled population, just like the able population has their share of inherent jerks. Additionally, consider that they may just be having a bad day or maybe they’re just having a hard time transitioning to a disabled life and identity. Who knows? Don’t be afraid of the burden they might be because I can tell you that they are equally, if not more, afraid of being that burden; and that combination will ultimately make you both unhappy and uncomfortable. With a little compassion, aspiration for universal design, effort and pragmatism on both sides, we can slowly and steadily make the world a better and more inclusive place for all.