It has been far too long since I have posted on the blog. My apologies, but we have all been incredibly busy as of late.
To bring some of you up to date on a major development with Ellie – As many of you may know, Ellie (26 months) is now taking unaided steps! aka WALKING! I think I have counted up to four steps in a row before she falls to her bottom. We will be introducing a pre-cane very soon. Based upon our research, users’ testimonials, and the experience of Ellie’s therapy team, many children thrive when pre-canes are incorporated in to their orientation and mobility repertoire.
Recently, I have been noticing a wonderful influx in blindness advocacy and consciousness raising in several media outlets. While I cannot deny that this recent increase may be due, in large, to my constant focus on all things blindness, it still fills me with immense happiness to discover that humanizing and beautiful portrayals of blind people, blindness, and disabilities are being published in major news and media sources.
I would like to share with you a few of the works that have had an impact on the way that I think about blindness and, well, life.
I’d like to begin with Rosemary Mahoney‘s beautiful opinion piece in the New York Times that was published in early January, 2014. In “Why Do We Fear The Blind,” Mahoney shares some of her own experiences working with a branch of Braille Without Borders in Trivandrum, India. No matter where you go in this world, no matter what one’s socio-economic station, there are painful, harmful, and down-right archaic perceptions (& prejudices) about the blind. Additionally, there are misconceptions that understand the blind to be seers of the great mysteries of the cosmos, or that they posses comprehensive memories that are incapable of failure or omission. With humble, yet profound insight, Mahoney writes: “I do not intend to suggest there is something wonderful about blindness. There is only something wonderful about human resilience, adaptability and daring. The blind are no more or less otherworldly, stupid, evil, gloomy, pitiable or deceitful than the rest of us.”
Also in the New York Times, writer and theologian John M. Hull, who went totally blind in 1983, at the age of 48, is profiled in a recent Op-Docs. “Notes on Blindness” is an adaptation of the “16 hours of audio diaries, excavating the interior world of blindness. They document a purging period of grief, but eventually of renewal, in what John describes as the discovery of a ‘world beyond sight.’ ” This film is stunningly beautiful and gave me insight into the mystery and multivalency of sensory input through John’s experiences. His testimonial allows for me to peer into the mystery of Eleanor’s blindness. John’s lament that ‘to be seen is to be perceived,’ is right. I, like John’s wife and daughter, long to be perceived by my loved one’s eyes. However, I know that I likely never will. But the world, “God,” in John’s words, offers subtle comforts and beautiful reminders of the completeness of creation, even if someone cannot gaze upon the earth, and humankind’s additions.
To watch Eleanor twist in the wind, shiver with excitement at the taste of chocolate, and laugh at the moving lights on her bedroom ceiling gives me immense joy, reminding me of the completeness of creation. (Even in times of trial and doubt.) I, for one, am grateful for Dr. Hull’s willingness to listen to his wife and participate in this event. It is life changing.
Last, but not least, are two portrait series that portray blindness in bold, stunning, and beautiful ways. One published by The Huffington Post, and another on Slate. They both have caused some controversy, but I’ll let you sort that out on your own.
I believe that should do it for now.
Thank you for all of your care, kind words, and attention. I commit to shortening the radio silence between now and the next blog post.
In solidarity and love,
P.S. If you haven’t discovered Tommy Edison, the “Blind Film Critic,” you should check him out! I cannot begin to describe how amazing and hilarious he is. Tommy’s observations and candor are nothing less than a paradigm shift.