Vita Brevis readers may remember from some of my older posts that my husband is an attorney who happens to be blind (he who I have disparaged occasionally with all love and affection). Recently he has been qualified as a candidate for the implantation of the Argus II Retinal Prosthesis System.[1] Once the surgery is completed, he will perhaps be only the fifth person in Boston to receive the implant and certainly the first in Maine. While this extremely new technology will not restore his sight, it will give him the ability to “see” images as patterns of light. I will still be the 20-something blonde I’ve always been (HAH!), but will appear as a glowing configuration of dot matrix lights!
The future has abruptly landed in our lives. I admit that perhaps all too often my brain resides somewhere in my family’s historical past, so I have begun to wonder about the physical disabilities of our ancestors, and how current research will change family history for future researchers. DNA research has already had a major impact on our family histories, solving mysteries, even bringing out more skeletons.
I wondered if any of my own ancestors were blind, what such a disability meant for their quality of life, and how they might have coped.
I knew that Husband has a rare combination of retinitis pigmentosa and non-age-related macular degeneration, but he does not have the specific gene RPE65 relating to retinitis pigmentosa. Short answer: his condition is not inherited from his parents or his other ancestors. Trying to find another blind person in his family would not be productive.
I wondered if any of my own ancestors were blind, what such a disability meant for their quality of life, and how they might have coped. I remembered my mother’s vague memory of a great-uncle who was blind, so I began by using census records to find him.
The first problem I encountered was the wording of the census question about whether the person listed was blind (in both eyes), deaf/dumb, idiotic, insane, or a convict. Frequently those descriptions were lumped together in one question, making any distinction impossible. The 1910 U.S. Census was the last to ask specifically “whether blind (both eyes)” or “whether deaf and dumb,” but nothing about insanity, idiocy, or convicts.
The 1900 U.S. Census did not list the question in any form, but reading carefully I found some individuals listed as “inmates” when their “home” was listed as “asylum.” These census columns did not always list “blind” next to an individual’s name, creating some confusion as to what exactly that person’s disability was: being a convict is not in the strict sense a disability!
His Civil War Draft Registration in June 1863, before his eyesight diminished, lists his occupation as “millman.”
I found that my maternal great-great-great-uncle Eben D. Roberts (1820–1891) had fluid cataracts which blinded him for his last twenty-three years. His Civil War Draft Registration in June 1863, before his eyesight diminished, lists his occupation as “millman.” The 1870 census shows that he was a retired merchant at age 51 (retired because of his failing eyesight?), but by the 1880 census, he was listed simply as “blind” at age 60.
Eben apparently had a successful work life, if shorter than it might have been otherwise, but without the family support of wife (she died before him) or children (he had none). He lived at his home with his niece until her marriage. He died “at home” in Corinna, Maine, avoiding the fate of many blind people: loss of independence and, perhaps, placement in an asylum.
The disabled have never been treated gently, from the Spartans’ view of infirmities to individuals holding signs on streets seeking alms or food. In fact, the word “handicap” comes from “hand-in-cap” (honest! I did not just make that up!), a hat being the predecessor of the ubiquitous tin cup. That was yesterday. Today, while discrimination exists in many areas, we no longer leave blind infants to die on mountainsides, although one former neighbor told me I should sit Husband in a lawn chair with a drool bib if he couldn’t “really help me.”
With apologies to Fleetwood Mac, yesterday’s gone, don’t stop thinking about tomorrow because it’s already here.
Note
[1] http://www.secondsight.com/g-the-argus-ii-prosthesis-system-pf-en.html.
Interesting premise for research! There is a book called “Everyone Here Spoke Sign Language,” about the very high rate of deafness on Martha’s Vineyard through the nineteenth century. Alexander Graham Bell came to study it and thought that it must somehow have been passed down in families, but was perplexed because only about one in four children seemed to be affected…though that makes perfect sense to modern geneticists for recessive traits. Evidently many of the island’s early immigrants came from an area of England that had a comparatively high rate of deafness, and this was compounded by generations of intermarriage. My direct ancestors and siblings seem not to have been affected, likely because they got brides “from off island” by generation three. How exciting that Husband is a candidate for this new implant!!
Interesting post– best of luck to your husband!! In my family, my uncle was diagnosed with retinitis pigmentosa, and two of his sons also inherited the condition. My grandfather was color blind and had “depth perception” problems, but since he died at age 70 over 50 years ago, we’ll never know whether his situation was also related to RP.
A problem with anecdotal evidence concerning family health traits that I have noticed is that some families never wanted to disclose illnesses– especially cancer– and sometimes they just never knew. Without a death certificate, it can be difficult to ascertain definitively what the person died from or any chronic conditions.
Jan, all good wishes for Hubby. I have needed glasses for nearsightedness sine I was 6. Have often wondered wha life would have been like before glasses invented.
Thank you, Alicia! I think life before eyeglasses was probably very blurry, something like it is now when I don’t wear mine!
My great great great uncle was born deaf and remained dumb. He was placed in the Illinois Asylum for Deaf where he met the daughter of a fairly wealthy brewer who was also deaf. They married and eventually lived outside the asylum. They never had children.
Loved this post Jan – diabilities being a subject dear to my heart. Best to you and Ross always!
Thanks, Jeff! You and Ross have disability interests in common: while you’re on the education end of it, Ross’s legal career has been in disability rights law.
For 15 years I searched for my Great, Great Aunt Mary Alice, believed to be my Mother’s namesake. Up until I lost her, she lived with family members; she never married that I could find. She then surfaced in the Texas Epileptic Colony and disappeared again. To me she was a gaping hole in my family history. I assumed she had a disability. I have one too. It hurt my soul to not know what happened to her. One day about three years ago I decided to do it the old fashioned way. I went to the Texas death records and searched every death they had listed for last names beginning with “C”. I found her. Of course her name was spelled wrong. But once I had that spelling, I could find the death certificate. In almost every box the response was “unknown”. But the death certificate showed me where she was buried. I cried for her because she had to live in a “Colony”, because her family could not care for her at home until she passed, because she was lost to us for so long. I cried even harder when I saw the pitiful, error-ridden stone that marked her grave. She is now reunited with us! I made a FindAGrave page for her that links her to her family all the way back to her origins in Meath, Ireland. I wrote the family story for her page for all to read. Anyone looking for that family will find ALL of them. I only wish I could do as much for all of my lost loved ones.
RPE65 is just one of the many gene mutations which cause retinitis pigmentosa, a very heterogeneous condition. Your husband may have a recessive form, in which 40 different genes have been reported to be involved. See https://sph.uth.edu/retnet/sum-dis.htm for more details.
Jan Doerr I really need to talk to you. You did some very good investigative writing on my family, the Maurer’s, back in 2016. Is there any way I can contact you?