Book Review: Creating Our Own Lives

 

Image: the cover of the book is a white background with "creating our own lives" in large red letters in the center. At the bottom is "Michael Gill and Beth Myers, editors" abd at the top is "college students with intellectual disability." In the rest of the white space are a bunch of illustrations of backpacks of many different colors and styles.

Creating Our Own Lives is a groundbreaking collection. This is true not only for the world at large but also for the most niche realms of disability justice and scholarship. All too often, intellectually and developmentally disabled (I will use I&DD for brevity) people are left out of disability discourse, or worse, are intentionally abandoned so that other disabled folks can prove that they're not like them. Collecting these voices of intellectually disabled folks about their experiences with higher education is truly admirable and absolutely crucial for disability justice to succeed for all.   

There are a wide variety of voices in this book with a wide range of intellectual disabilities and support needs. Some entries are composed by a single disabled author, while others include multiple voices from both the disabled author and their family, tutor, friend, mentor, etc. We end up with a snapshot of the many ways people can experience college, what they want from it, and how they can best be included with other students rather than solely placed in a separate facility. Some authors also include poetry or other creative forms of expression with their entries. 

The common thread that was woven throughout these essays was the importance of the college experience. This book offered a welcome challenge to my internalized capitalism and meritocracy. Even as a disabled anarchist who initially went to college for art (later psychology) knowing that there was no money there, to learn and experience new things, I found myself asking, "but is this going to get you a job that will make a living wage? Will you be able to pay off debt? Are you learning the (right, valuable, constructive, etc) things?" It was fantastic to be pushed back into the thinking that I want to have- that there is value in the experience and learning in and of themselves that should be available to all. This is not to say that they didn't learn important things that benefitted them later- they certainly did and that's clear.  

This book also did not shy away from some of the specific dangers and hurtles faced by students with intellectual disabilities. One author along with her family recounts the experience of rape, calling attention to the frequency at which women and girls (and frankly, all other genders) with I&DD are targets of predators. Others discussed how their race, sexuality, nationality, specific access needs, etc affected their experiences. The way many people describe their experiences and how they process the world offers a much better look into their lives than textbooks written by non-I&DD professionals.   

I was also left with some worries. There are a few programs mentioned multiple times throughout that I had not previously heard of and thus would like more information on. There is also a thread of the authors generally having suppotive family and friends and enough financial support to cover the costs of education and all of the supports around it. I used to work with I&DD folks who were mostly middle age and older adults, many of whom had few to no supports and lived in poverty. How can we make these programs accessible to them?   

Another thing that really worried me was the frequent mention of unpaid internships. Unpaid internships are already exploitative and shady when the people slaving under them don't have I&DD. When you take into account that the USA allows disabled people to be paid sub-minimum wage and the fact that many of the contributors were seeking jobs in things like food service, teachers assistants, early childhood support, etc, unpaid internships seem like a great way for corporations to both profit from an image of "helping" disabled people while having them work without pay. Perhaps there's a small modicum of redeemability if an internship leads you to a high pay job where you can recover from working for nothing. This is not the case with many of the jobs sought out here. Generally, people who join food service jobs, for instance, go through training at their location and are paid during that time. There's no reason that should change for an I&DD person. I do not feel that the editors reckoned enough with these possibilities of exploitation. They did discuss ableism and interconnected oppressions, but seemed to see these programs as an antidote.  

In the end, my question is: Are these programs equitably designed or are they a drink of water in the desert? It's probably a bit of both. Nonetheless, this book exists as an important step forward and justly highlights the voices of people who often remain unheard and unseen. I hope that it leads to more scholarship in this direction.  

This was also posted to my goodreads.