Are Deaf Women entitled to Reproductive Choice?

Maura Mena and her Baby
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Disability Independence Group files suit against Planned Parenthood for failing to provide sign language interpreters or programs for Deaf Girls and Women

On August 2, 2013, Maura Mena went into a Planned Parenthood location in Miami, Florida.   As a pregnant woman, Maura did not know what her options were at that point and was not sure what she wanted to do. She thought of an abortion. On August 1, 2013, Maura’s boyfriend suggested Planned Parenthood.  Since Maura did not have a phone, he made the call for her and set up a time for the very next day. It was clear that the boyfriend was in a rush to have the procedure done as soon as possible.  Maura did not hear the call.  She is deaf.

Like most of Maura’s relationships, her boyfriend did not understand American Sign Language and communicated through basic signs and pantomime. As a result of the relationship between Maura and a hearing man, he assumed dominance in all interactions between Maura and others who could hear and understand English.  She asked him to make sure that they provided her with an interpreter, but Planned Parenthood advised him that she would need to bring a “translator” with her at the time of the appointment.

On the morning of August 2, Maura arrived first at the Planned Parenthood location in Miami, and her boyfriend arrived late. When Maura arrived for her procedure, she asked her boyfriend, “Where is the interpreter?”  Maura was upset and argued with her boyfriend in sign language and in front of the staff about how she needed and wanted an interpreter.  Her boyfriend told her to be quiet, as it would cost them more money if she was going to postpone the abortion, and as she was homeless, she did not have any more money to spend.  Maura started to cry.

Usually, when a hearing woman goes to a Planned Parenthood, the staff ensures that the woman is not a victim of domestic violence.  Because they could not speak to her, that was not done. Only the boyfriend spoke with the doctor and could not and did not interpret what the doctor told him to tell to Maura. She did not receive information about the abortion procedure, the parental counseling or other procedures conducted by Planned Parenthood.

Maura was provided forms on an electronic tablet to sign.  In all forms, Planned Parenthood referred to Maura as “MAURA (FULLY DEAF) MENA”, as if “FULLY DEAF” was part of her name given to her by her parents.  The forms were not translated to American Sign Language, and Maura was asked to sign them to get the procedure.

At no time in the medical record does it indicate that Maura’s boyfriend was present during the intimate partner violence screening, the abortion procedure, the parental counseling or other procedures conducted by Planned Parenthood.

Even though they insisted that she bring someone to translate for her, they tried to communicate with her by both “lip-reading” and writing notes.

Only about 30% of English speech sounds appear as lip movements. The majority of English speech sounds emanate from tongue, throat, breath, and other physiological functions invisible on the lips. Thus, approximately 70% of speechreading involves guesswork apart from the “data” gathered from watching lip movements.  Because she is not fluent in English and does not have the ability to do this guesswork, Maura was able to answer only the most basic questions and understand only a fraction of any information provided to her.

As for notes, the first communication was when the receptionist wrote down the price of the procedure and asked if she could pay.  The second was during a point in the procedure when Maura’s boyfriend left the room, leaving Maura alone with the doctor. The doctor displayed a series of pamphlets in the examination room, none of which Maura understood, and then wrote down on a piece of paper, “NEXT TIME USE A CONDOM.”

Maura received the medications for the medical abortion but did not understand how to use the medication.  She did not know how much or in what order she was supposed to take the medication. Maura was told to come back on August 16, 2014.  After that appointment, she was still in pain and cramping and did not know what was occurring, and she was not provided an adequate understanding of what was happening. On August 20, 2013, because she did not believe she was permitted an interpreter at Planned Parenthood, Maura went to the Emergency Department of Hialeah Hospital because she was experiencing vaginal bleeding.

After the abortion, Maura continuously cried.  She did not know what alternatives she had other than to have the abortion, and she wanted to have more children.  A year later, Maura gave birth to a baby boy.

Deaf Women and Girls Have the Rights to be Given the Same Information and Education as Hearing Women and Girls.

Planned Parenthood Federation of America (PPFA) and its affiliates are the nation’s largest reproductive health care provider, with more than 700 health centers across the country.  PPFA and its affiliates serve more than three million people per year and provide sex education training to over one million young people per year. To provide this education and training, PPFA and their affiliates receive over 300 million dollars of federal funding per year.  Persons with disabilities have unique needs, and PPFA should recognize this and modify their practice so that they provide the same services to persons with disabilities as other “able-bodied” women.

According to PPFA publications, women with physical disabilities are at a great risk of being victims of intimate partner violence (IPV).  Women with disabilities experience almost twice the rate of all forms of abuse compared to women without disabilities.  In fact, studies have shown that 83% of women with disabilities are sexually assaulted at some point in their lives. The IPV risk factors potentially associated with different disabilities (e.g., blindness, spinal cord injury, cognitive impairment, or deafness) are different in consideration of the barriers they may (or may not) present to self-defense, judgment, mobility-related safety, and access to IPV services or preventive educational initiatives. Deaf women, like Maura Mena, are often subject to communication control as a form of IPV, including when perpetrators had greater speech abilities.

In recognition of the prevalence of IPV, PPFA and all of its affiliates, have adopted a policy where, for each visit, each medical center provides intimate partner violence (IPV) screening. It is standard practice that screening for IPV should be confidential, direct, and non-judgmental. Screening should be done on a routine basis as part of the medical intake. For clients with limited English proficiency, trained interpreters should be used; the use of family or friends as interpreters should be avoided if at all possible.  IPV screening must be done in absolute privacy to reduce the danger that the patient’s partner will learn of the disclosure and retaliate. Such IPV screening is to ensure that the woman is not in a position of coercion, and the choices with regards to reproductive choice are her choices, and not that of a parent, partner or caregiver.

In order to ensure a woman’s choice, privacy, and the absence of coercion, PPFA and their affiliates use Language Line when an in-person staff member does not speak a patient’s verbal language.  Language Line provides on-demand interpreters in any spoken language. PPFA and their affiliates, should, at a minimum, utilize Video Remote Interpreting or any other device to communicate with deaf women to determine whether their choice of waiving an interpreter is voluntary and their privacy is secured.  Further, states like Florida have heightened consent requirements, which require providers to ensure that effective communication is provided to convey what is statutorily required to present.

Through Maura’s story it is clear that the issue of IPV, as well as sexually predatory actions by men or women who are deaf, spread from the absolute lack of any sexual education in American Sign Language.  As parents do not communicate in ASL, schools do not teach sex ed, and television or other media is not in ASL, there is no background or context in which to discuss sex or reproductive health.  As a result, deaf women are often victims.

Education for Deaf Girls and Women

Maura was born deaf and grew up in South Florida with divorced parents, neither of whom were deaf or communicated in sign language.  Similar to many deaf children of hearing adults, Maura received no sex education from her parents or school, nor any education regarding her rights to have access to information. Maura did not begin her education until she was seven years old and later attended high school at South West Miami Senior High School.  She spoke primarily ASL and graduated with a fourth grade written English ability, which is not uncommon, as ASL is Maura’s primary language. She had her first child when she was 20 years old in 1996, while in a long term relationship.  Maura gave birth at Baptist Hospital, and her cousin was in the delivery room with her and interpreted for her. Four years later, Maura had two surgical abortions in North Miami.  She did not have interpreters at either of these abortions and did not know the risks, alternatives, or health effects of these abortions.  Subsequent to the abortions, she could not walk and had severe fever and bleeding for several days. At the time, she lived with her mother, who disapproved of the procedure and criticized and belittled her while she was in pain.  Her mother stood by while Maura on both occasions stayed at home until the adverse effects of the abortion subsided.

Planned Parenthood provides information for those who can hear and those who can read English and Spanish, but not for those women who are deaf, and who are in need of such information because of the lack of any other outlet to receive this information.  When women have this information, they have the power to control their own bodies and their own choices.  Deaf women are entitled to this power as well.

Remedial Actions:

DIG’s goal in this action is to ensure that deaf women receive the same services and information as any hearing person who goes to any PPFA affiliate, which includes, but is not limited to:

  • The right to make independent decisions regarding reproductive care or treatment without pressure or coercion from a non-disabled partner;
  • The right to ask questions and receive information in American Sign Language;
  • The right to learn about alternatives to terminating the pregnancy and entities available who can help her with her pregnancy and her children;
  • The right to learn about the availability of medical assistance benefits for prenatal care, childbirth, and neonatal care;
  • The right to understand the medical procedure, the medications that are being administered, and other emotional and medical issues involved in obtaining an abortion;
  • The right to have printed or electronic information converted into ASL for the Deaf;
  • The right to understand her contraception choices, and be able to discuss her issues with contraception and the types of contraception she used in the past; and
  • The right to be  treated with dignity, and not be relegated to a label, instead of a name.

The message needs to dramatically change that women who are deaf or have other disabilities have the right to reproductive education and care for their needs.

Complaint

Exhibit A,  Exhibit BExhibit C

A Note From Matthew..

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Matt kayaking with his son Max.  Matt is in the front and Max in the back holding the paddle.  By: Matthew Dietz

 

 

July marks the 24th Anniversary of the Americans with Disabilities Act, America’s unambiguous mandate to rid this country of disability discrimination, which President George H.W. Bush declared as an obstacle for persons with disabilities to “Independence, freedom of choice, control … and the opportunity to blend fully and equally into the right mosaic of the American mainstream.” When he signed the ADA, President Bush stated – “Let the shameful wall of exclusion finally come tumbling down.”  Twenty-Four years later, the fight continues, this time for the U.S. Senate to ratify the United Nations Convention on the Rights of Persons with Disabilities, which ensures that persons with disabilities internationally have the same human rights and dignity as persons with disabilities in the United States. Martin Luther King stated, “Injustice anywhere is a threat to justice everywhere”, and as such, we will continue to fight!

 

 

Introducing Animal Partners –

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A core individual freedom is a one’s natural right to make decisions affecting his or her health or body. This freedom is an integral part of the dignity and control for persons with disabilities as well. One of the major goals of the Disability Rights movement is that each person with a disability has the right to self-determination – free from the patriarchal attitudes of the “able-bodied”. This right to make medical decisions extends not only to traditional forms of medicine, but also to alternative treatments that assists a person with daily life activities — whether these activities are physical, sensory, psychological or social. More and more people with disabilities are using animal companionship and assistance to help them with their daily lives. DIG is creating a new project to address the needs of people with disabilities who would like to use service animals or emotional support animals. The project is called “Animal Partners”.

If you go to justdigit.org, and read our newsletter or look at our blog at justdigitlaw.wordpress.com, you will meet Deborah Fischer, who uses a service dog, Sorenson, to assist her due to her multiple sclerosis. You will also meet Anthony Merchante, a six year old boy, who uses a seizure alert and protect dog, Stevie. Last month’s newsletter contained the fight of U.S. Air Force veteran, Ajit Bhogaita, to keep his dog, Kane, at his home to assist him in coping with his post-traumatic stress disorder.

Using animals as a component of therapy has long been recognize to cause significant improvements in cognition, social interaction and physical skills for persons with disabilities. Not only may an animal assist in physical activity, it also builds an emotional connection between a person and an animal promotes release of the neurohormone oxytocin. Oxytocin is responsible for inducing feelings of love and trust and is strongly implicated in pair bonding. For the past few years, more and more people with disabilities have chosen to enhance their lives and their condition by using animals as components of their care and lifestyle. This ranges from the elderly person that has depression or Alzheimer’s, a veteran that suffers from PTSD, an autistic child that needs a companion animal to become socially interactive, to an epileptic person that needs a seizure alert dog.

The law may allow people to have their service or emotional support animals in many public and private areas, however, many employers, or housing providers do not understand the law and they just automatically deny people with disabilities the right to have their animals. On the other hand, people with disabilities often do not know what is required to have a service dog, and the limitations of having an emotional support dog or a service dog. “Animal Partners” will attempt to present the law and requirements in a user-friendly manner so people will understand the rights and responsibilities relating to assistance animals. “Animal Partners” has a two pronged mission.

  • First, to legitimize a person with a disability’s choice to have an assistance animal and to provide information of value and tools so that a person with a disability can by empowered to make an informed choice.
  • Second, to make our community to be a kind and civilized place where it is acceptable for people with disabilities to feel comfortable and welcome with their assistance animals.

We hope you friend our “Animal Partners” Facebook site, visit the webpage at justdigit.org, and sign up!

Why

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“Why?” is the most common question asked when I said that I was going to  change my practice into a non-profit disability rights advocacy center. My reasons are each and every person with a disability that I have represented over the past eighteen years. With every single person, the issue was not about money, but about the dignity of being a human being, and having the same ability to enjoy life as any other person. Even when I was not successful, I was always able to give my clients the power and dignity to fight for their equality and humanity.
This is a new era where people with disabilities eschew labels and demand their rights. Those who are Deaf or who have vision impairments demand equal access to information, those with depression and anxiety demand emotional support animals, those with disabilities demand the right to have their own families
and make their own decisions regarding independent living, and those with learning disabilities demand testing and course accommodations. Disability Independence Group or DIG is an invitation for persons with disabilities to declare their independence from antiquated notions of a second class existence.
Disability Independence Group will be a center where people with disabilities can learn how to enforce their rights and a training center for future lawyers to learn how to enforce the rights of persons with disabilities. It will advocate for a definition of diversity and integration that includes persons with disabilities. DIG will be a hub for the growing internationalization of disability
rights in Central and South America. We have a big job and big dreams. Matt Dietz with Parrot