Blind-Sided by a Prejudice System

Serena and my brother Billy in the
sensory room at the NFB Convention

What's the sense of it all?! (no pun intended) In a civilized society, you might think, how could this happen?  The following news story was forwarded to me by my sister-in-law, Carol Castellano, who is the national president of Parents of Blind Children.  As some of you know, my neice, Serena was born in 1984, very premature (23.5 wks) and weighed 1 lb. 4 oz.  She was in the NICU for 8 months, suffered pretty much any complication imaginable but I am happy to say was exclusively breastfeeding on discharge.  Serena is now 26 years old and attending graduate school at Rutgers for her MSW.  And yes, I almost forgot, she is totally blind.  Why did I mention that last?  Because my neice is leading a full and productive life. She was educated in her hometown through the public school system.  Serena started reading braille in pre-school, learned to use a cane by grammer school.  Even though she had an classroom aide in the lower grades, she graduated high school and lived away at college with no classroom aide or assistant what-so-ever!  Among her many interests, Serena is a sports fanatic and music buff.  So the article below, really hit home to me.  It nearly ruined my whole day last Thursday as I cried most of the morning and was so emotional I could barely write....

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.

The trauma to these poor people, I can only imagine.  The separation and lost breastfeeding opportunity for this mom and baby....it just made me sick! (I did contact a consultant who is willing to help Erica initiate and enjoy some nursing again, if she so wishes)

My neice, Serena aspires to get married and have children, as is her right and privilage. She is by far one of the most intuitive women I have ever known, as many non-sighted people are, and would make a wonderful mom!. So we have to make sure that what happened to this couple, never happens again.

It's OK to be blind and also be a parent!!!

Carol Castellano (New Jersey) blindchildren@verizon.net:

"--blind people can lead normal lives complete with a job,

a family, friendships, fun, and involvement in community life."

Stress of Our Sisters

Stress kills. There has been enough research to prove that. But is stress killing our mothers and babies, especially our black mothers and babies? I say, yes!

First, here is the recent evidence of racial disparity related to maternal /child health:
• A recent NY Times article stated that black women in New York are seven times more likely to die in childbirth than white women.
• An article in a University of Wisconsin alumni magazine, said babies born in Sri Lanka have better health outcomes than black babies born in Milwaukee.
• Another study appeared in the Journal of Community Health concluding, despite socioeconomic differences, fatherless children born to black women had a seven-fold risk of death in contrast to infants born to Hispanic and white women in similar situations.

Now, a quick lesson, about how the human body copes with acute stress. Cortisol “the stress hormone” is released in increased amounts during stress and in turn, helps regulate the body’s many functions
• Proper glucose metabolism, regulation of blood pressure, insulin release for blood sugar maintenance,
   immune function, inflammatory response.

Small increases of cortisol have some positive effects:
   • a quick burst of energy for survival reasons, heightened memory functions, a burst of increase immunity,  lower sensitivity to pain, helps maintain equilibrium in the body.

The problem: while cortisol will return to normal following a stressful event, in our current high-stress culture, the body’s stress response is activated so often that it doesn’t always have a chance to return to normal, resulting in a state of chronic stress.

Most importantly, the higher and more prolonged levels of cortisol in the bloodstream (like those associated with chronic stress) the higher the negative effects, like:

• Impaired cognitive performance, suppressed thyroid function, blood sugar imbalances such as hyperglycemia, decreased bone density, decrease in muscle tissue, higher blood pressure, lowered immunity and inflammatory responses, slowed wound healing.

• Increased abdominal fat, which is associated with a greater amount of health problems than fat deposited in other areas of the body. Some of the health problems associated with increased stomach fat are heart attacks, strokes, the development of metabolic syndrome, higher levels of “bad” cholesterol (LDL) and lower levels of “good” cholesterol (HDL), which can lead to other health problems!

Now, let’s put this in context with a pregnant black woman. It doesn’t matter if she is rich or poor, good neighborhood or bad, educated or uneducated, single or partnered. It is safe to assume that most women are under emotional and physical stress when pregnant. Isn’t it telling that the same medical conditions given for the poor outcomes of pregnant black women are the same conditions resulting from high, chronic stress, for instance, obesity, high blood pressure, high blood sugar and infection? So it must be that black women exhibit or internalize stress at a higher level than their counterparts.

Now for the babies, a mother’s stress level, during pregnancy directly impacts the baby’s physical and emotional health. Research has linked this with preterm delivery, lower birth weight, “The common conception that a mother’s psychological state can influence her unborn baby is to some extent substantiated by the literature,” write Ali S. Khashan, M.Sc., of the University of Manchester, England, and colleagues. “Severe life events during pregnancy are consistently associated with an elevated risk of low birth weight and prematurity.” Chemicals released as part of the mother’s stress response may have an effect on the fetus’ developing brain.

What can be done? If we were to conclude that chronic stress leads to persistent high cortisol levels, which then leads to all these health complications for mothers and babies, how do we fix that? Can we step into someone’s life and eliminate their stress? No. But I do think we can help them limit their exposure, possibly and lessen their body’s response to stress. So they can manage their stress better.

Let’s face it. If you do not address the “inner reasons” someone overeats or is depressed, you can conduct all the nutrition classes you want but they will not work. We need to give women the tools to cope with the multitude of stressors they faces on a daily basis. People have overcome tremendously stressful situations with 12 step work so I propose “The 12 Step Program for Pregnancy”

I am thinking of a program similar to many12 step programs. Support groups for pregnant and new mothers listening and learning from each other. Basing the program on many of the slogans and doctrine of successful 12 step programs, for instance, One Day at a Time, Live and Let Live, Think, Let Go/ Let God, Keep It Simple, the serenity prayer also choosing a sponsor, having a call list and weekly meetings. These are simple and effective principals anyone can learn. Along with classes in guided imagery, journaling, self-hypnosis, exercise, yoga, music, breathing exercises and meditation in the prenatal period and postpartum for the first year.

Promoting healthy, coping skills that can be applied to anyone, at any time, would be a proactive, low cost intervention. Supporting the management of stress through finding serenity, our pregnant mothers would benefit from a new way of thinking, a new way of acting, giving them and their babies a new lease on life.