By Steve Jacobson, Vice-president

There has been a good deal written lately in these pages about the help that we receive as blind people.  Reactions to the article that Jennifer Dunnam and I wrote, articles printed in the Spring 2010 issue, and some other recent events have compelled me to revisit this subject.  I have received a number of comments on our original article, not all of which were complimentary, but this has opened the door for some very useful and important discussion.  This is an exceedingly important topic because it affects how we interact with, and are viewed by, the public and even affects positions we take on governmental programs.

In all that I write here, there are two basic assumptions that I am making that need to be clearly set forth as a starting point.  As blind people, each of us has our own particular set of strengths and talents.  This means, obviously, that areas where help might be useful will vary from individual to individual.  In that sense, I am not claiming "one size fits all."  Nothing here should be construed to mean that one should never request help when it is needed.  The second point is that each of us is an ambassador for all blind people when we interact with the public.  We cannot decide whether we will be an ambassador, we can only decide whether we care.  Those who say that they don't choose to represent blind people when they interact with the public are simply saying that it doesn't matter to them that their actions may affect the rest of us.  What being an ambassador means to me is that I do try to be patient when I am frustrated with the manner in which help is offered, and I view it as an educational opportunity.  It also means that the help I accept will, unless I am careful, be seen as help that all blind people need.  It is the nature of being a part of a minority group, whose lives are generally a mystery to the public at large.  Therefore, it is understood that how we deal with the public regarding help will reflect upon all of us so we need to keep in mind how our reactions may reflect upon us as a group.

One area upon which I hope to forge some agreement is in the area of what I am calling "institutional help."  I do not mean the kind of help one might get when confined to an institution of various types, though.  I mean, rather, the kind of help that is institutionalized through policy or management decisions.  Those who then convey that category of help to us do it with conviction because it fits into their image of blindness as well.  Let us look quickly at several recent events to see how this category of help affects us.

Recently, an 18-year-old woman on a United Airlines flight was told that she should remain seated when the plane landed in Chicago and someone would come and assist her to exit.  The airline staff forgot about her, and she felt she should wait as instructed.  The plane completely emptied and was closed, and airlines maintenance personnel discovered her some time later.  The publicity regarding this incident was very critical of the airlines for forgetting her.  While I do not know if there were other circumstances that caused this woman to remain seated, the reasons given only mentioned blindness as the cause for this request.  We live in a time when one thinks twice about not doing whatever the airlines say needs to be done, so each of us must consider what we will do when airline instructions conflict with what we know we need.  It is therefore in that context that I ask why there is no questioning of her responsibility at least to make her situation known as the airplane became empty.  The answer is very simple, of course.  Those writing the news articles and United Airlines staff believe that being blind, even as an adult, means we are not responsible for ourselves.  In their minds, they are responsible for us in the same way that they are responsible for children traveling alone.  While being stranded on an empty plane is not a common occurrence, requesting that we remain seated and wait to be escorted off the plane is far more common.  This very request has been made to me a number of times so I can speak from personal experience and my course of action is obvious to me.  Even if the help being offered is done with my well-being in mind, it is not help that I feel I can accept in good conscience and I generally ignore the request and deplane with the rest of the passengers.  The problem here isn't that the woman in question might have needed help; the problem is that she was expected to wait because she was blind.  To choose to take an independent course as I do means I must go against the instructions of the airlines, but the statement is important to me to make. 

A blind couple recently experienced some difficulties feeding their newly born child while in the hospital.  They requested and received assistance and the feeding problem was resolved.  However, the incident was reported to Child Protection Services and the baby was taken from the parents and placed in foster care.  There were no general problems beyond issues faced by many first-time parents, blind or sighted.  The assumption was not how can the social service agency make sure things are going smoothly; rather the assumption was that we as blind people can't parent, can't learn, and must therefore be helped while protecting the child by removing the responsibility of raising a child from us.  We have seen similar cases where time has shown that the parents were good parents and that the decision to remove the baby from the home was made hastily and incorrectly.  The basis for such decisions on the part of social service agencies is lack of information about blindness, and the assumption that closing one's eyes provides all the information needed to determine the capabilities of blind parents.  There is again the additional assumption that these are blind people, not responsible adults.  Sadly, once these parents get their baby back, will they dare ask for help if they need it?  (Editor’s Note:  This case was happily resolved for the parents.  See the press release at the end of this article.)

This final event didn't make the news, but it offended me to such a degree that I asked Jennifer Dunnam if I could relate it.  She recently traveled to a concert in Chicago that took place in a small theater.  Part of the venue was that fans could choose to stand near the stage rather than be seated.  Having communicated with others attending the concert, Jennifer chose to stand with others near the stage.  Theater staff first asked, and then insisted that she take a seat in the “handicapped section.”  Such language as "We'll put you in the handicapped seats" was used.  Since different people approached her each time with progressively more insistence, it is clear that the theater’s management was administering the “help”.  Yes, the word "put" was used, not "assisted", "aided", or "directed" to a seat, as if she were a piece of furniture.  In their minds, she needed the handicapped seats because the loss of vision meant the loss of the ability to walk any great distance as well.  No consideration was given to the fact that she had just traveled 400 miles by train independently to get to this concert.  Accepting this "help" would have meant giving up some of the enjoyment she had anticipated, and it would have reinforced their distorted view of blind people.  She finally responded firmly and remained standing, enjoying with others the live atmosphere being close to the stage.  However, the experience detracted from her enjoyment of the evening, and why?  Somebody at some level made some assumptions about her, and the stereotypes of blindness made the staff eager to act based upon those assumptions.  They felt that, appearances to the contrary, Jennifer was blind and therefore was less able to stand, and that they knew better what was good for her than she did herself.

While lack of information about blindness and blind people is at the root of all three of the above events, I maintain that the issue of offering and accepting help is also very much involved.  In most offers of help, there is an element of one human being reaching out to another.  We need to nurture and grow that part of the help we receive, and we need to return it to others.  However, there is often an assumption that we are not as responsible, that help is to be given whether we think we need it or not, and that we should be grateful for whatever help we receive even if it inconveniences us or is given without asking.  Particularly when that kind of help is formalized in policies and management decisions, we need to do what we can to change the underlying assumptions.

There are connections between events like this and our daily lives.  Do you suppose there might be a connection between the insistence that blind people should not stand when all seats are taken on a bus and that we should not stand at a concert?  Could a theater employee have been asked to relinquish his or her seat for a blind person on the Chicago Transit system?  Might it be that some United Airlines staff witnessed otherwise able-bodied blind persons being moved to the front of a check-in or security line so they wouldn't have to wait, fostering the notion that special help to leave the plane is required?  Might a social worker have been affected by his or her experience with another blind person who expected to be helped with tasks that could have been accomplished independently?

We have a right to feel frustrated at times with how the public sees us.  However, we must also realize that things won't change unless we think about the help we accept.  As stated at the outset, each of us needs help at times.  Even though blindness has some unique challenges, all people need help from others.  However, we need to be careful not to accept help that someone feels is a necessity just for our convenience because, if we do so, it confirms the necessity of that help in his or her mind.  We must try gently to educate as well, not just the public, but one another.  This is the only way that things will change.  This isn't always easy, but we can help one another by thinking about what is needed and what is convenient, and how to convey the right message to the public at large.

(Editor’s Note:  The following press release explains the outcome of the case of the removal of the baby from her blind parents cited above.  The happy ending to this misbegotten “help” does not diminish our need to remain ever vigilant.)

National Federation of the Blind Successful in Returning Infant to Her Parents

Family Reunited After Wrongful Seizure of Child

Independence, Missouri (July 22, 2010): The National Federation of the Blind (NFB) and its Missouri affiliate announced today that they have succeeded in a legal fight to bring a two-month-old infant, Mikaela Sinnett, home to her parents, Blake Sinnett and Erika Johnson of Independence.  The NFB of Missouri hired an attorney to assist the couple after Mikaela was taken from them at Centerpoint Hospital almost immediately after she was born.  For fifty-seven days the couple, both of whom are blind, were allowed to visit their child in foster care but were not allowed to bring her home.  The sole reason given by Missouri’s Department of Social Services was that the couple was blind and could not properly care for Mikaela without the assistance of a sighted person twenty-four hours a day and seven days a week.  An evidentiary hearing was scheduled for July 20, but at the last minute the state of Missouri dismissed the case against the couple.

Dr. Marc Maurer, President of the National Federation of the Blind, said: “The National Federation of the Blind is pleased that the state of Missouri has dismissed its case against Blake Sinnett and Erika Johnson and returned baby Mikaela to their care.  Despite the fact that blind parents are successfully raising children across the nation, blind Americans continue to find that misconceptions and stereotypes about the capabilities of blind people too often result in hasty and unwarranted decisions to remove children from the custody of blind parents.  The worst nightmare of parents everywhere—having a child taken away—is sadly part of the lives of too many blind parents.  The National Federation of the Blind stands ready and willing to help state officials across the country understand how blind people use alternative techniques to care for their children.  But the blind of America will not tolerate our children being taken from us.”

"We were and are outraged at the action of Centerpoint Hospital and the state of Missouri," said Gary Wunder, president of the National Federation of the Blind of Missouri.  "Children's services have the job of protecting children from abuse and we have nothing but admiration for that work.  Taking a child away because her parents are blind is an entirely different matter which violates state and federal law.  We have gotten Mikaela back home, but we must fundamentally change a system that presumes the incompetence of blind parents and operates on a principle of guilty until proven innocent rather than the reverse.  We cannot help but think that new parents who are blind in Missouri will avoid seeking medical and social services that they may need for fear that they will experience a similar ordeal.  We can never give back the two months this family has lost, nor can we restore to Erika the joy of nursing her child that this separation has made impossible.  What we can do is use their adversity to change the system that allowed this atrocity and educate the people who have mistakenly equated blindness with a lack of perception, intellect, and judgment."

On May 21, 2010, Erika and Blake went to Centerpoint Hospital, where Erika delivered Mikaela.  When trying to nurse the baby for the first time, Erika asked for assistance from a nurse when she thought something was wrong.  The nurse said that the baby was turning blue and helped reposition the baby, who then began to take nourishment.  The nurse assured Erika that it was common for new mothers to need some instruction and that she was doing fine.  Blake and Erika were therefore surprised when, some four hours later, they were met by a children's services worker who made inquiries about their vision; asked how they would feed, diaper, and supervise their child; and eventually decreed that Baby Mikaela would not be allowed to be discharged with her mother unless the social worker could be assured there would be constant supervision by someone with sight.  On the recommendation of Missouri's Children's Protective Services, Mikaela was placed in foster care and one-hour visits were arranged for several times each week.  When the National Federation of the Blind of Missouri determined that blindness was the only reason the child was taken by the state, the organization hired attorney Amy Coopman to handle the case.  The National Federation of the Blind now has the option to file complaints with the Missouri Human Rights Commission and/or the federal Office for Civil Rights, as well as at least three options that can be pursued in the state’s courts.