Braille Monitor                                     August/September 2017

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Transforming Hope into Action: A Report from the World Blind Union

by Fredric K. Schroeder, PhD, President
World Blind Union
July 14, 2017

Fredric SchroederFrom the Editor: Dr. Fred Schroeder is a longtime leader in the National Federation of the Blind, having served for some time as the first vice president of the national organization. He now serves as the president of the World Blind Union, and he continues to be a concerned and active participant in seeing that collective action is brought to bear on the problems faced by the blind of this nation and the world. Here is what he said to the 2017 convention on Friday, July 14:

Tenzin Gyatso, better known as the Dalai Lama, once said: “If you want others to be happy, practice compassion. If you want to be happy, practice compassion.”

But what is compassion? The English word compassion combines an archaic form of the Latin word “com,” meaning “with or together” with the word passion, derived from the Latin word “passus.” Hence, compassion means with passion or to share passion but not the passion of physical desire. Instead it is passion in the sense of suffering, as in the passion of Christ. To show compassion means to suffer along with another person, to share his or her suffering, to experience it together with that person.

So, what does this have to do with blind people? Does blindness make us suffer? Well, certainly not in the way society imagines. We do not suffer the inability to learn or to attain an education; we do not suffer the inability to work; we do not suffer the inability to raise a family or to contribute to the welfare of our community. But we do suffer the negative consequences of stereotypes about blindness and the presumed inability of blind people.

None of us will ever forget Baby Mikaela. Mikaela’s parents, Blake and Erika, are blind. While all new parents are a bit uncertain about what it will mean to bring a new life into the world, most parents have no reason to fear the state taking away their newborn child. After all, a child is only removed from the home when the parents are unfit—when a baby has been neglected, abused, or abandoned—right? Blake and Erika learned otherwise. Just four hours after Mikaela’s birth, a social worker took Mikaela away saying: "I just can't, in good conscience, send this baby home with two people who are blind."

I am certain the social worker meant well. I am sure she was genuinely concerned for Mikaela’s safety. It is not surprising that a social worker would wonder whether blind parents could care for their newborn child. It is not surprising that she would need to gather information about how blind people raise their children, but that is not what she did. Based on nothing more than her assumptions about blindness—her “good conscience” standard of care—she concluded that since Blake and Erica were blind, they were incapable of caring for their newborn infant. Accordingly the social worker, acting with the crushing authority of the state, removed Baby Mikaela from her blind parents and petitioned the court to make the removal permanent.

The right of parents to raise their children without state interference is a fundamental right under the due process clause of the Fourteenth Amendment to the United States Constitution. It is a serious right, yet, for fifty-seven days the state had custody of Baby Mikaela. For fifty-seven days Mikaela and her parents were separated—fifty-seven days that can never be recovered. Did Blake and Erika suffer? They most certainly did, but they did not suffer the heartache of inability. They suffered from having their fundamental right to parent—a constitutionally protected right—stripped away based on nothing more than the assumptions of a social worker acting on the basis of her good conscience standard of care.

Fortunately, with the help of the National Federation of the Blind, Baby Mikaela was returned home, but the underlying problem persists. Sadly, the problem is neither new nor uncommon. All too often we encounter people who assume they know better than we what we can and cannot do, what is reasonable and unreasonable, what is safe and unsafe. And far too often they seem to feel perfectly free to take charge of our lives and to decide for us what we may and may not do, according to their assumptions about us and our abilities—the good conscience standard applied to virtually every aspect of our lives.

My wife Cathy and I are blind, and as many of you know, we have two children. We are truly grateful that we did not suffer the devastation experienced by Mikaela and her blind parents. Still, like all blind people, we daily encounter others who would decide for us what we can and cannot do.

When our daughter Carrie was born, Cathy wanted to keep Carrie alongside her in the hospital room. This was called rooming in and was recommended to help the mother and the baby bond. As Cathy was being taken to her hospital room, she reminded the nurse that she wanted to keep Carrie in the room with her. The nurse said it would not be safe since Cathy would not be able to see the baby in the crib and would not know if she stopped breathing. What mother lying in a hospital bed can see a baby sleeping in a bassinette? And, more to the point, what mother holds a twenty-four-hour vigil, constantly watching the newborn to make sure the baby is breathing? Fortunately, our doctor put an end to the discussion by directing that Carrie be kept with Cathy. Still, the good conscience standard loomed large when we were faced by a nurse who assumed she was better able than Cathy to judge what would be safe and unsafe for our newborn baby.

Two years later, when our son Matthew was born, he was slightly jaundiced, meaning he had a yellow tinge to his coloring from too much bilirubin in his little body. The doctor, a different doctor from the one who delivered Carrie, said it was common and nothing to worry about, but just to make sure, she said she would visit our home the next day to see how Matthew was doing. I told her we would be happy to take Matthew to her office, but she said she would stop by instead. Did our doctor stop by our house just to check Matthew’s skin coloring, or did she want to see for herself whether Matthew’s blind parents were able to provide a fit environment for a newborn baby—and based on what? The good conscience standard? Perhaps she had both in mind, but there is no way to know, and, again, there was that moment of dread, that moment of apprehension, wondering why she would want to come to our house rather than have us take Matthew to her office; and wondering, if something were to happen, what in the world could we do about it.

Fortunately, nothing did happen. Our children were not taken away, but we experienced that chilling dread, the feeling of helplessness, knowing that, if the doctor had felt Matthew was in danger, a social worker would have given much more credence to the doctor’s judgment than to ours; and that is at the heart of the problem—the good conscience standard—others believing they are better able than are we to judge what we can and cannot do.

Another example of the problem involves cases of divorce. During divorce proceedings, far too often the sighted spouse will argue that the blind spouse is incapable of caring for the couple’s children. Never mind that the blind parent has been a primary caregiver all along. The judge is told that the children will be in danger if the blind parent is given custody or even shares custody; and in far too many cases, the judge agrees. The best interests of the child, determined by applying the good conscience standard, demands that custody of the children be awarded to the only parent who can provide a safe environment, the sighted spouse. But don’t worry. In most states you will still be allowed to talk with your child over the phone and attend your child’s school performances.

And then there is adoption. Despite a growing need for adoptive parents, blind people and others with disabilities regularly face discrimination. Often they are precluded from becoming adoptive parents based on the assumption that their disability renders them unable to care for a child—another manifestation of the good conscience standard at work.

Discrimination against blind parents and others with disabilities is real; it is not an exaggerated concern, not a rare and isolated problem. A survey, conducted by Through the Looking Glass, a National Center for Parents with Disabilities, found that 15 percent of parents with disabilities reported attempts to have their children taken away. Altogether, 42 percent of parents with disabilities reported discriminatory treatment, including being pressured to submit to sterilization and/or being pressured to have an abortion. And, this is not just a US problem.

In Canada a report titled Bridging the Gaps: Violence, Poverty & Women’s SheltersAn Update on Non-Resources for Women with Disabilities revealed that, as incredible as it may sound, in child custody disputes there have been cases in which government workers have recommended to judges that, rather than awarding custody to a parent with a disability, custody be granted to the nondisabled parent, even when the nondisabled parent has a documented history of violence and abuse.

So, we have a US problem and a Canadian problem, but there is more.

In Turkey, the law provides that in the case of unmarried parents custody goes to the mother, that is unless the mother is dead or has a disability.

In Australia a 2015 report by the Office of the Public Advocate titled Rebuilding the Village: Supporting Families where a Parent has a Disability found that children are removed from parents with disabilities at a rate many times greater than the children of nondisabled parents.

Compassion, true compassion, requires us to do more than wring our hands in helpless, hopeless, impotent despair; it requires us to take action—affirmative, collective action. That means changing the public mind, and it means consecrating our rights in law.

On December 13, 2006, the United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD is the first UN treaty to enumerate specific rights for people with disabilities.

Article 23 of the treaty, Respect for Home and the Family, prohibits discrimination against parents with disabilities. It affirms the right of people with disabilities to have children and to be free from discrimination in matters of child custody and adoption.

Unfortunately, as you know, the United States Senate has not yet ratified the CRPD, and there is no indication that it will do so anytime soon, but that does not mean we can be complacent and simply wait.

President Riccobono typically receives one new request each and every month from a blind parent seeking help with a child custody dispute. The problem has gone on far too long, and the time to end discrimination against blind parents is long overdue. And, it is up to us to do something about it.

Because of the work of the National Federation of the Blind, today eight states have statutes protecting blind parents from discrimination in child custody matters: Connecticut, Illinois, Maryland, Missouri, South Carolina, Tennessee, Utah, and Washington State, but that is only a beginning. We must redouble our efforts and work until all states have adopted our model parental rights for the blind bill. No one will do it for us; we must do it for ourselves.

So, do blind people suffer? Well, not in the way society imagines. We do not suffer inability or helplessness; but we do suffer the consequences of social misconceptions about blindness. When a blind mother has her newborn infant taken away, not because of neglect or abuse, but because of the misconceptions and misapprehensions of others, she suffers, and so do we—so do you and so do I, and so do blind people everywhere. Compassion, true compassion, requires us to take action—collective action—here in the United States and in every country around the world.

Here in the United States we must continue to press the Senate to ratify the UN CRPD, and we must continue to press the legislatures in all of the states to adopt our model parental rights for the blind bill.

In the words of the Dalai Lama: “If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” Or to paraphrase: If you want other blind people to live with dignity and self-respect, engage in collective action. If you want to live with dignity and self-respect, engage in collective action. Compassion is at the heart of collective action, and collective action is the foundation of change. Together we have changed the world, and together we will continue to change the world until we have freed ourselves from the tyranny of the good conscience standard—limitations not imposed by blindness but imposed on us by the well-intended yet misguided assumptions of others. We will continue to work together until we are finally able to live the lives we want, free from low expectations and discrimination.

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