They say it’s never a good idea to meet your heroes, that flesh and blood humans can’t possibly live up to our idealized projections of those we know only on paper and film. Until about nine months ago I was happy to take that bromide as gospel. To that point I had met people I respected and admired – sometimes to my delight others to my disappointment – but I had never met a true personal hero, someone I not only respected but revered. Then, in February, I met Tom Shakespeare.

Professor Tom Shakespeare is a sociologist, trained in the Cambridge department of Sociology, the very same institution where I presently have the pride, pleasure and privilege of pursuing my PhD, where he was among the (if not the) first sociologists of disability in the world. He was a pivotal figure in the emergence of the movements of disability rights, pride, and justice in the United Kingdom in the 1980s and 90s, and by extension, was a pivotal figure in the emergence of the global forms of those movements as well. He is considered one of the world’s foremost experts on disability, the phenomenon and experience, writ large, and is now consulted by organizations ranging from the United Nations to the WHO to the BMA and the AMA, as well as governments the world over; questions related to all aspects of disability policy, both legal and beyond. In a nutshell, he’s a big deal and every bit of his reputation has been earned.

My connection with Professor Shakespeare goes beyond our shared institutional roots. He, or his thought, rather, helped to reshape my vision of disability justice and pride, and lifted me from the disappointed depths of disillusion.

In my youth I participated in a protest against unjust, untenable, absurd Medicaid cuts at the Texas Statehouse. The atmosphere was electric and energizing. I left feeling invigorated, fulfilled and transformed. The Texas protest was my first experience as a “disability activist” and I was hooked. I began to channel my energies into becoming a top notch disability activist, first in the national political context and later within Jewish religious life. I thought of myself as a social justice warrior and with every passing month, every speech I made, presentation I gave, and discussion I participated in, I became increasingly convinced that I would become a world class activist.

Then, as I reached my teenage years, a realization struck me and shattered my enthusiasm leaving me empty and careening toward nihilism. I realized that I had been idolizing and emulating false gods of disability activism, people who, as my PhD supervisor once put it, had been sucked in by the disabilities studies Death Star. I realized that my idols had been seduced and were applying (or tragically misapplying, rather) a form of postmodernism and social constructionism which did not and does not comport either with my experience of disability or with empirical reality itself. I felt hoodwinked, the rug had been pulled out from under me and, petulantly pre-adolescent, I felt acutely alone and isolated in my realization.

This is where, through the guidance and insistence of Jessica Kramer, Professor Shakespeare’s work Disability Rights and Wrongs flew full throttle into my consciousness like an X-Wing flying circles around the Death Star. I immediately recognized that there existed at least one person putting forth a rigorous argument about how to conceive of disability culture, pride, history, future, and justice in a manner consonant with my basic perceptions of my own experience and of reality beyond my direct experience. I basked in Professor Shakespeare’s work, anxious to absorb all he had to teach me and the world, and taking heart in the knowledge that where there was one person who though this was there would have to be more. That first contact with Tom Shakespeare’s work and every contact thereafter have inspired me to be more than an activist. His work has pushed me to become an activist scholar and has served as the very model of effective thought and argument for me since first picking up Disability Rights and Wrongs more than a decade ago.

Thus, you will understand, dear reader, the excitement I felt when in February Professor Shakespeare agreed to speak at a meeting of the Cambridge Moral Sciences Club at Newnham College. Naturally I attended and, after watching Professor Shakespeare dismantle an archetypal example of the disability studies Death Star in Elizabeth Barnes’ recent book Mere Difference – title really explains the book, all result of social forces arbitraty and take on the validity of fundamental statistical assumptions made in the WHO’s most recent census of the disability population I approached him and I asked him a question. Rather, I asked him the question. The question related to my disability identity that had burned in the core of my soul. The question I which I believe he had answered in his writing but whose response I needed to hear straight from the proverbial horse’s mouth. The question: if you could inject a syringe full of a serum into yourself that would cure your disability, transforming your body and mind so that they conformed perfectly and without any divergence at all to the normative ideals of health, wellness, ability and capacity in our society, would you do so? And, if so, then what is the meaning of the concept disability pride?

To my immense satisfaction his answer confirmed that I had been reading his work correctly, that I had understood his lessons, that he was the academic I though him to be. Disability pride is not an affirmation and celebration of the limits we experience, the constraints placed on our engagement with the world by the ways our bodies and mind happen to be, happen to misfit in the world. Instead, it is a celebration and affirmation of the strength, knowledge, wisdom, power infused into our very being by the process of living through the struggles of those limitations, growing around those constraints, finding ways to flourish beyond them even as they remain fixed in place. His answer affirmed my own recognition that if such a golden needle existed I wouldn’t hesitate to plunge it into any part my body. That doesn’t mean I would go back in time to undo my experiences rather it is a choice to be able to enact new possibilities of engagement with the world.

Following the question we continued to talk. I told him about myself and my work, my hopes and ambitions, the ways that he had inspired me, and to my surprise, found that he was interested in my ideas, respected my intellect and the things I had so far accomplished in my nascent career. We found that we shared a love of classical music and we began a dialogue that has persisted in the intervening months.

One day in late October Professor Shakespeare, to my immense pleasure, invited me to attend a performance of Shostakovich’s tenth string quartet by the Emerson’s String Quartet at a major London venue. The name of the venue is not important, however, it is important that the venue was not the Royal Opera House. That is because many, if not most, London venues lack wheelchair and walker accessibility, the Royal Opera House being the exception. However, it was Tom Shakespeare extending the invitation, so the thought that there would not be an answer to any potential accessibility problems that might arise was absurd, he must know the lay of the accessibility landscape. Honored to have received an invitation to engage in a cherished pastime with one of my heroes I accepted unquestioningly, I went with it.

On the morning of the concert full of optimism and excitement, not only was I to attend a classical musical performance with a personal hero but I had also planned to take advantage of the trip to meet a dear friend in the city for tea. By the time I reached London though my blood would be boiling. To start off, my carer, through no fault of their own, was almost an hour late. This in turn caused me to miss the train I had planned to take from Cambridge. No problem, I though, I’ll just catch a later train. However, my attempts to do so were frustrated by staffing problems at the train station. Three times I was left standing on the platform in the pouring rain, watching in impotent rages as trains bound for King’s Cross pulled out minutes before the short-staffed accessibility team members showed up.

After two and a half hours I decided that enough was enough. My appointment for tea had dissolved into frustrated delay on the soggy platform. I was not going to allow the same to happen to the concert with Professor Shakespeare. I moved wearily but deliberately as fast as I could to the accessibility office of the train station, knocked on the door and demanded to speak to a senior manager, explained the situation, communicated my judgment that the situation was unacceptable, qualifiedly accepted the manager’s explanation and apologies for the series of failures, and insisted that somebody wait with me from that point for the next train and stop that train from leaving the station by administrative instruction if necessary, until the ramp could be put in place and I would get on the train.

Not usually one to succumb to what so many right-wing pundits the world over have indefensibly characterize as ‘victimhood rage’, by the time I was safely aboard the train I felt utterly inadequate, and impotent, attacked by the whole world up to and including the labor market of carers available in the United Kingdom, the UK labor unions who had chosen to strike, the UK train system, the rain. As I stewed I spun out an ever wider web of ways in which I had been subtly socio-structurally assaulted by an ever-widening scope of institutions, practices, and systems on the basis of my disability.

As the train chugged towards London I brooded about having missed out on tea and seethed about arriving late to a cherished opportunity to meet my hero socially. Again, I must underline the fact that I don’t normally engage in this kind of despair, I don’t frame myself as the victim, I don’t view the barriers put in place by society, whether they spring from stupidity and incompetence, prejudice and bigotry, or sheer complexity, as insurmountable. Ironically, more than anyone, it was Tom Shakespeare, the man I was on my way to meet, who taught me to be wary of such victimhood framing. But the distance of the fall from excited possibility to frustrated impotence was getting to me.

The night, however, was about to take a turn…