Sarah Blake LaRose

In the blindness community, we spend a lot of time talking about our achievements. Most often this means acknowledging the development of braille 200 years ago, acknowledging the founding of whichever blindness organization we are part of, and discussing the contribution of whatever blindness organization we are part of to the passing of historic legislation. The rest of our energy is focused on advocating for more progress. This isn’t a bad thing–that progress is badly needed. But it is necessary for us to know that some of the problems we still face are here because our past is not so far behind us as we may like to think.

One hundred years ago, most blind people made their livings in vocations that we consider “typical blind people’s jobs”: teaching other blind people, musicianship, or selling their handcrafted products. Today it is difficult for any person to earn a good living as a musician, especially since the onset of the pandemic. Earning a living selling handcrafted products is even harder. Finally, the popularity of individual transport and the success of inclusion of blind students in local schools has resulted in the loss of teaching options for blind adults who do not have drivers. While the ADA requires the provision of reasonable accommodation to enable an employee to perform a job, reality is that sometimes a driver is a financial hardship.

Typical causes of blindness in children during the early 20th century were accidents on farms and infectious diseases. Typical causes of blindness in adults were accidents and war. A great amount of energy was devoted both in the blind community and in society at large to preventing and stopping the spread of blindness. Parents were encouraged to pay close attention to their children’s play to prevent accidents and to examine their eyes for infection. Blind teens and adults who lived in residential settings were housed in separate buildings and prohibited from interacting, lest they marry and have blind children. Vestiges of this attitude are still with us today. Many blind people have encountered sighted people who have expressed concerns about whether they should have children or not. Reasons for such concern include everything from ideas about the possibility that the child might be blind to ideas about whether the blind parent could care for the child properly, even though the sighted person has never adequately learned how to live as a blind person.

Most sighted people think about blindness in terms of what might happen if they suddenly lost their sight. They don’t consider how they might continue living successfully after sight loss but instead think of blindness as a horrible tragedy that destroys every aspect of life. This philosophy invades all kinds of professions including education, psychology, and medicine. It prevents people who are blind from receiving quality services. We must advocate and educate wherever we go, often repeatedly to people who don’t believe us and often while trying to take advantage of important services like psychotherapy or medical treatment that depend on the provider having an adequate understanding of how we live.

Without this understanding, a psychotherapist may assume that a person’s depression is caused by feelings of sadness about blindness. Certainly blindness-related hassles cause upset and even anger. But it may be just aas likely that the person has other reasons for depression that need to be addressed and that spending time educating a therapist aggravates existing mental health problems.

Medical providers who treat every patient as if they are recently blind do an extreme disservice by classifying them as fall risks and failing to learn how to interact properly with them. Female patients have been forcibly undressed and probed for bed sores without even being told what was happening.

During the 1940s, doctors began to report on new causes of blindness that were not related to infectious diseases, including an epidemic of blindness in thousands of premature babies in the 1950s and a second wave during the 1970s. As Americans moved into urban areas, the incidence of accidents in children also decreased. The causes of blindness have remained fairly stable except for a rise in rubella during the 1960s.

These changes are significant for people who provide supportive care in any way to older adults who are blind. Literature most available to the public at large warns adults about risk of blindness due to cataracts, macular degeneration, and glaucoma after age 50. All of this is true. It is also true that these conditions rarely cause a complete loss of sight. They cause significant changes in the way that a person sees, and since most often the oldest adults who lose their sight do not receive life-changing rehabilitation and do not receive encouragement to take advantage of new life techniques, they are most at risk of injury due to blindness.

Older adults who have been blind throughout life will continue to use the same techniques that have allowed them independence. They are at risk for other age-related disabilities but other disability agencies are unprepared to accommodate their blindness and empower them to continue life as independently as possible. This means that blind people are at risk of languishing in nursing homes, suffering from depression because they cannot access the community activities that other residents are participating in. I have spoken recently with people who were placed in nursing homes because they were falling. Why didn’t someone come and teach them to navigate using a wheelchair? If they can walk through an environment such as their house without their cane, they should be able to drive a chair in it and learn to transfer to a bed or chair.

A nursing home may provide good medical care, but the blind person will lose all their accessible things from home. Does the nursing home have acccessible games? Who is going to assist the blind person in getting from here to there in the unfamiliar environment? This is a much more limiting option for a blind person than for another senior who, once transferred to their chair by a nurse, is able to wheel himself from his room to the community room and back if he wishes.

All our advocacy for access to public spaces is good, but we have some hard work to do that is perhaps less about advocacy and more about education. Since the 1930s information about blindness and aging has been hidden away in rehabilitation journals. We need to bring it into the open so that it is accessible to doctors, nurses, people who check us in at hospital front desks, X-ray techs, and people who work at other disability agencies.

We also need to be learning about other disabilities so that we are prepared to support people with other disabilities who have adult-onset blindness. Their experience isn’t the same as the experience of an adult with diabetic retinopathy or retinitis pigmentosa who goes into a rehabilitation center and does all their training in the standard blindness curriculum. We need to think about how we can become open to provide service that meets the needs of people who have to learn how to access their medical devices, learn how to ambulate using wheelchairs or as a person with blindness and hearing loss, etc.