Here’s a book that I really have no idea how it got onto my radar, but I’ve had it on my TBR backburner list for a little while now. And within a week, I both saw the first review of it on #bookstagram that I’ve ever seen (thanks @andreabeatrizarango) and walked past it on a display at the library (it was “hot and cold memoirs: memoirs that have red or blue covers”…a strange display, but there you have it). And I figured that was a sign that it was time. Bonus: the e-audiobook was also available so I could read and listen at the same time. It was a great combo, because Girma reads it herself, but the physical book had photos that I was glad I was able to see!
“People with disabilities succeed when communities choose to be inclusive. […] Disability is not something an individual overcomes. People with disabilities are successful when we develop alternative techniques and our communities choose inclusion.”
In this memoir, Haben Girma shares her story (so far) as a deafblind woman navigating life and the world. Starting with stories from her childhood in school in California to her present day as a disability rights lawyer and activist, and sprinkled in between with some really fascinating stories of her parents lives (her father born and raised in Ethiopia and her mother in Eritrea, including her mother’s escape to Sudan as a refugee from the Eritrean War of Independence), visits to her family in Eritrea, and the differences in her own experiences being deafblind in the US versus her older brother’s experiences being deafblind in Eritrea.
I don’t know what I was expecting, honestly, but this book was really a joy to read. Of course, there were many challenges as a result of Girma’s disability, some of which were infuriatingly preventable/addressable if someone had cared to, and I will get to that, but overall, there was just such an upbeat and uplifting sort of feel to Girma’s writing. She focused so much on her life experiences, from learning to dance to climbing glaciers to building schools in Mali to family events (and trying to fight bulls!) in Eritrea to meeting and speaking with President Obama to international speeches to, of course, her academic achievements and successes as the first deafblind student to attend and graduate from Harvard Law School. While it would have been ideal if she didn’t have to fight so hard to have access to these experiences, it was still just wonderful to be able to read about her incredible inner push, the “going after your goals” mindset, the facing down your own (and others) fears, and just the general vibe of proactivity and perserverance that she carries with her. Like, I personally have almost none of the physical or (arbitrary) social limitations that Girma lives with, and yet the idea of traveling the world and giving speeches in front of large groups and meeting the President and going to Harvard Law School (or any law school, really), is still super intimidating and seems out of reach. I’m so incredibly impressed with her drive and loved reading about her own delight in everything she was able to experience!
As far as some of the more disability rights and discrimination aspects of the book were concerned, Girma speaks with clarity and candidness about the realities of being deafblind in a sighted and hearing world. Some of the things she experienced as an elementary school child were really frustrating to read. Things that I feel like should absolutely have been a school/teacher’s responsibility to take the lead, fell on Girma’s shoulders. And I am sure that the one or two examples she gave were but a fraction of what she actually dealt with. What a truly unfair and unreasonable situation(s) to put a child in – no matter how many more accommodations she got in the US than she would have gotten in Eritrea, this country could, should, still be better. And it continued into college, at which point she had more of her own knowledge and strength to fall back on, but still shouldn’t have needed to the extent she did (like seriously, having to threaten a lawsuit because the dining hall/cafeteria couldn’t figure out complying with basic ADA regulations is ridiculous). Plus, what an example (and just one example) of the way disabled people are taken advantage of, even with laws that say otherwise, because companies/institutions think it’ll be easier not to comply and, I guess, just assume that disabled people will let it go or not have the resources to fight back? And then even at Harvard, where there were many accommodations made for accessibility, it still seemed as though the fact that it was all afterthought made it all less successful than it might have been. On this note, Girma makes a really great note in the “After” section, where she includes suggestions for ways that places and communities and businesses can be more disability-accessible and essentially her point is that it’s easier (and generally cheaper) to start there, building them in from the beginning, than to add them in as an afterthought. On the whole, from text-to-speech software to tactile cues to her braille-reader computer/keyboard to her seeing-eye dog (Maxine!), I was truly fascinated reading about the myriad and creative (both low and high tech) options for deafblind accessibility.
Although I thought, at times, that the writing itself was a bit juvenile, it didn’t have too much effect on the overall product that was Girma’s memoir. I learned so much, and realized how much more I can do (personally and professionally), and I can encourage work/community spaces to do, to provide more inclusive access for people with disabilities. Girma’s perspective, and advocacy, provides such insight into the marginalization of disabilities…not because disabled people are “less” able, but because the world is set up to not accommodate them at all, without thought or interest in how or making it easier in any way. Along similar lines, she talks a lot about when the issue is framed as “overcoming disability”, the overuse of being “inspired” by those with disabilities that reads mostly as pity, and how then the community is not encouraged to change/adapt/provide a more accessible environment – the need for a framing shift is so clearly necessary. Overall, a deeply thought-provoking, internal “do better,” push of a book that highlights a perspective that every nondisabled person should read, to at least begin to address the depths of ableism within ourselves and our society.
Some passages I highlighted while reading:
“It’s a sighted, hearing classroom in a sighted, hearing school in a sighted, hearing society. They designed this environment for people who can see and hear. In this environment, I’m disabled. They place the burden on me to step out of my world and reach into theirs.”
“I brace myself for a tricky conversation. Guiding him through his disability fears requires summoning up enough courage for all of us. My own fears need to stay hidden. Any sign of nervousness on my part till trigger their protective instincts. The production of courage for three people, my parents and I, feels draining. I’ve been doing it more and more; my steps towards independence keep bringing up their fears for my safety. They raised me with stories of their long, arduous journeys to freedom, and I’m determined to reach for mine, too.”
“But I know my abilities, better than anyone else. I’m the expert when it comes to what I can and can’t do.”
“Sighted or blind, Deaf or hearing, each of us holds just the tiniest fraction of the world’s wisdom. Admitting we don’t know everything will aid us on this Trek for Knowledge.”
“Ableism runs so deep in our society that most ableists don’t recognize their actions as ableist. They coat ableism in sweetness, then expect applause for their “good” deeds. Attempts to explain the ableism behind the “good deeds” get brushed aside as sensitive, angry, and ungrateful.”
“Blindness is just the lack of sight, but people inflate the disability to an absurd degree. They assume incompetence, intellectual challenges, and an inability to contribute with alternative techniques. This is decades of cultural stories perpetuating the idea that people with disabilities are inferior to the nondisabled. Wherever I go, regardless of how hard I work, I keep encountering ableism.”
“Love takes time. Love forms through the expression of genuine appreciation, the creation of clear boundaries, the practice of forgiveness, and mutual respect. Over time, these experiences weave together, forming a strong bond between two beings. Time and experience have fostered a trust that draws us together, building a shared understanding that continues to grow.”