Professor Paul Steven Miller was a lawyer, professor of law and an advocate for the disabled. He died in October 2011. Professor Miller also had a condition of dwarfism and suffered discrimination in the workplace. His New York Times obituary said,
"Drew Hansen, an adjunct lecturer who taught with Mr. Miller, said his colleague had long been concerned about the carrying out of the 1990 Americans With Disabilities Act. “He believed that judicial interpretations of the A.D.A. were more restrictive than they had been of civil rights laws because there was not a similarly visible mass social movement,” Mr. Hansen said."
Professor Miller felt, as many do, that it is not always in the best interest of disabled people to correct the genetic differences that result in their particular disability. In a presentation at Georgia State University he had this to say:
"Professor Paul Steven Miller Speaker Program on Avoiding Genetic Genocide
February 28, 2008
"Good Intentions and Eugenics: Avoiding Genetic Genocide"
Event details
Audio recording of this event
Professor Paul Steven Miller spoke on "Good Intentions and Eugenics: Avoiding Genetic Genocide" to a packed room of over 150 people in February 2008. Professor Miller has devoted his professional career to fighting discrimination against those with disabilities.
Professor Miller's impressive resume includes roles as the White House liaison to the disability community, President of Little People of America, and one of the longest-serving commissioners of the U.S. Equal Employment Opportunity Commission. Exploring the relationship between the medical and disability communities, he explained that although everyone wants to do what is in the best interest of disabled individuals, what actually is "best" is often understood quite differently by physicians, health care researchers, and people with disabilities.
Professor Miller observed that there are two frameworks used to understand disability: the medical model and the social/civil rights model. The medical model reflects the dominant societal view that illness and disability need medical solutions so that the ill or disabled person can fit into mainstream society. Alternatively, the social model strives to change society to embrace the disabled person as she or he is.
Professor Miller noted that "the advent of genetic technology has a tendency to pull the focus of disability further into the medical-model realm" and that "the disability community is concerned that genetics as currently defined, practiced, and presented to the public reinforces the stigma of disabled individuals as defective individuals." Commenting on the need for the medical and disability communities to understand each other's histories, he also explained:
"The history and social context of the eugenics movement informs how people with disabilities currently view genetic science and medical science as a whole. There is no question that the genetic revolution holds great promise and that today's doctors and researchers have good intentions and want to improve human health for all. But because of the complex historical and cultural context associated with the science of genetics, the medical and disability communities have a difficult time understanding each other."
The lecture was followed by an in-depth question and answer session and a reception where audience members could meet and talk further with Professor Miller."
Many high-functioning autistic people have argued that they do not want or need to be "fixed". They prefer acceptance.
When a person is able to function independently, support themselves financially, and have meaningful and lasting relationships, I see the point. Perhaps they feel that their disability is a part of their identity and that they would not be the same person without it.
However, when a disability results in substantial dependence on family or society for support, physically and financially, when an individual can not express their needs or desires, when their opportunities to enjoy education, work, friendships, family and freedom are substantially limited compared with non-disabled peers, then genetic solutions will be a blessing. Those who want and need a "fix" should have it. Those who feel their lives are fine without a fix, should be accepted as they are.
What do you think?
Sunday, June 12, 2011
Saturday, June 11, 2011
Violence Prevention Program for Developmentally Disabled Citizens
The Arc of Maryland has developed a violence prevention program for their clients called The Personal Space Program.
There is certainly a need for such a program. To quote from the ARC document:
"According to research, most people with disabilities will experience some form of sexual
assault or abuse during their lifetime (Sobsey and Varnhagen, 1989). Victims who have
some level of intellectual impairment are at the highest risk of sexual violence (Sobsey and
Doe, 1991). Persons with developmental disabilities have a 4 to 10 times higher risk of
becoming crime victims than persons without developmental disabilities. One study of
alleged crimes against people with disabilities revealed that 90% involved sexual offenses
(Carmody, 1991). Both males and females with developmental disabilities are victims of
sexual violence, however women experience sexual violence at a higher rate than their male
counterparts. Sobsey cites 78.9% females compared to 21.1% of males in research from the
University of Alberta (Sobsey, 1994). Consistent with this, a number of other studies on
rates of sexual assault against women with developmental disabilities reveal that over 80%
had been sexually assaulted (Hard, 1986). Of those who reported being sexually assaulted,
50% had been assaulted 10 or more times (Valenti-Hein and Schwartz, 1995). Sobsey and
Doe indicate that in 56% to 62% of cases involving sexual assault or abuse of children and
adults with developmental disabilities, penetration occurs (Sobsey, 1994)."
The goals of the program are:
Orientation:
· To give participants information about the course
· To help participants get to know each other
· To help participants embrace the idea of difference, and concept of choice
Sexuality:
· To know their body parts
· To know what parts of the body are private and which are public
· To be able to define sexuality
Healthy Relationships:
· Be able to describe a healthy relationship
· Describe the different types of relationships you have
· Describe the appropriate kinds of touches for each relationship
Sexual Harassment:
· Know what sexual harassment is
· Understand that sexual harassment is against their civil rights
· Increase their assertiveness skills
· Know the steps to take when sexually harassed
Sexual Assault:
· Know what sexual assault is
· Understand that sexual assault is against the law
· Know ways to prevent being sexually assaulted
· Know what steps to take if they are sexually assaulted
Domestic Violence:
· Know what domestic violence is
· Understand that domestic violence is against the law
· Know ways to prevent domestic violence
· Know what steps to take if they experience domestic violence
When Someone Who Is Supporting You Hurts You
· Define sexual abuse by direct care staff and others who provide support in daily living
· Distinguish appropriate behavior from abusive behavior
· Understand that violence by direct care staff and others who provide support in daily living is
against the law
· Know what steps to take if they are a victim of violence by direct care staff and others who provide
support in daily living
Safety Planning:
· Know what a safety plan is
· Know preventive safety strategies
· Know ways to react in dangerous situations
· Complete a safety card
Anyone can access the Lesson plan and teaching materials to address the issue of personal safety by accessing this document. Copy and paste this URL:
http://www.thearcmd.org/files/Final.PDF
There is certainly a need for such a program. To quote from the ARC document:
"According to research, most people with disabilities will experience some form of sexual
assault or abuse during their lifetime (Sobsey and Varnhagen, 1989). Victims who have
some level of intellectual impairment are at the highest risk of sexual violence (Sobsey and
Doe, 1991). Persons with developmental disabilities have a 4 to 10 times higher risk of
becoming crime victims than persons without developmental disabilities. One study of
alleged crimes against people with disabilities revealed that 90% involved sexual offenses
(Carmody, 1991). Both males and females with developmental disabilities are victims of
sexual violence, however women experience sexual violence at a higher rate than their male
counterparts. Sobsey cites 78.9% females compared to 21.1% of males in research from the
University of Alberta (Sobsey, 1994). Consistent with this, a number of other studies on
rates of sexual assault against women with developmental disabilities reveal that over 80%
had been sexually assaulted (Hard, 1986). Of those who reported being sexually assaulted,
50% had been assaulted 10 or more times (Valenti-Hein and Schwartz, 1995). Sobsey and
Doe indicate that in 56% to 62% of cases involving sexual assault or abuse of children and
adults with developmental disabilities, penetration occurs (Sobsey, 1994)."
The goals of the program are:
Orientation:
· To give participants information about the course
· To help participants get to know each other
· To help participants embrace the idea of difference, and concept of choice
Sexuality:
· To know their body parts
· To know what parts of the body are private and which are public
· To be able to define sexuality
Healthy Relationships:
· Be able to describe a healthy relationship
· Describe the different types of relationships you have
· Describe the appropriate kinds of touches for each relationship
Sexual Harassment:
· Know what sexual harassment is
· Understand that sexual harassment is against their civil rights
· Increase their assertiveness skills
· Know the steps to take when sexually harassed
Sexual Assault:
· Know what sexual assault is
· Understand that sexual assault is against the law
· Know ways to prevent being sexually assaulted
· Know what steps to take if they are sexually assaulted
Domestic Violence:
· Know what domestic violence is
· Understand that domestic violence is against the law
· Know ways to prevent domestic violence
· Know what steps to take if they experience domestic violence
When Someone Who Is Supporting You Hurts You
· Define sexual abuse by direct care staff and others who provide support in daily living
· Distinguish appropriate behavior from abusive behavior
· Understand that violence by direct care staff and others who provide support in daily living is
against the law
· Know what steps to take if they are a victim of violence by direct care staff and others who provide
support in daily living
Safety Planning:
· Know what a safety plan is
· Know preventive safety strategies
· Know ways to react in dangerous situations
· Complete a safety card
Anyone can access the Lesson plan and teaching materials to address the issue of personal safety by accessing this document. Copy and paste this URL:
http://www.thearcmd.org/files/Final.PDF
Thursday, June 9, 2011
The National Disability Rights Network
What is NDRN? To quote from the website for NDRN:
"The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Through training and technical assistance, legal support, and legislative advocacy, NDRN works to create a society in which people with disabilities are afforded equality of opportunity and are able to fully participate by exercising choice and self-determination.
WHO WE SERVE
NDRN members serve individuals with a wide range of disabilities – including, but not limited to, those with cognitive, mental, sensory, and physical disabilities.
WHAT WE DO
NDRN members investigate reports of abuse and neglect, and seek systemic change to prevent further incidents; advocate for basic rights; and ensure accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems for individuals with disabilities."
Issues that are addressed by NDRN include:
Abuse and Neglect
Assistive Technology
Community Integration
Criminal Justice
Disaster Management
Education
Employment
Housing
Juvenile Justice
Medicare / Medicaid
Mental Health
Traumatic Brain Injury (TBI)
Vocational Rehabilitation
Voting
If you or a loved one has a disability, this site is worth a look. They include stories about current disability rights cases in the courts. They also include information about TASC (The Training and Advocacy Support Center).
There are some interesting publications about the lack of workplace opportunities with fair wages for the disabled and the issue of restraint and seclusion in school
To visit the website for The National Disability Rights Network, copy and paste this URL:
http://www.napas.org
"The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Through training and technical assistance, legal support, and legislative advocacy, NDRN works to create a society in which people with disabilities are afforded equality of opportunity and are able to fully participate by exercising choice and self-determination.
WHO WE SERVE
NDRN members serve individuals with a wide range of disabilities – including, but not limited to, those with cognitive, mental, sensory, and physical disabilities.
WHAT WE DO
NDRN members investigate reports of abuse and neglect, and seek systemic change to prevent further incidents; advocate for basic rights; and ensure accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems for individuals with disabilities."
Issues that are addressed by NDRN include:
Abuse and Neglect
Assistive Technology
Community Integration
Criminal Justice
Disaster Management
Education
Employment
Housing
Juvenile Justice
Medicare / Medicaid
Mental Health
Traumatic Brain Injury (TBI)
Vocational Rehabilitation
Voting
If you or a loved one has a disability, this site is worth a look. They include stories about current disability rights cases in the courts. They also include information about TASC (The Training and Advocacy Support Center).
There are some interesting publications about the lack of workplace opportunities with fair wages for the disabled and the issue of restraint and seclusion in school
To visit the website for The National Disability Rights Network, copy and paste this URL:
http://www.napas.org
Potomac Community Resources Serves Teens and Adults
In Montgomery County, MD, there is an organization that began in 1994, and now serves hundreds of teens and adults with developmental differences. Programs that PCR offers include basketball, chorus, basic communication skills, music therapy, art, photography, Tai Ji (martial arts), and a Friday night social club. They have a Mens's Group and a Women's Group that meets in a local church and they have special events like Earth Day activities. In addition, they offer a Sunday afternoon respite program with many fun and therapeutic activities, once a month.
PCR sends out a periodic newsletter, has a website and is on Facebook. If you are in the Washington D.C. metropolitan area and think you might be interested in looking into PCR activities, the Spring sessions end in July, so there is time to register for the next sessions.
To read more about PCR or to register for these programs, copy and paste this URL
http://www.pcr-inc.org
PCR sends out a periodic newsletter, has a website and is on Facebook. If you are in the Washington D.C. metropolitan area and think you might be interested in looking into PCR activities, the Spring sessions end in July, so there is time to register for the next sessions.
To read more about PCR or to register for these programs, copy and paste this URL
http://www.pcr-inc.org
Genetic Mutations Involved in Many Cases of Autism
In the news today, an interesting article about the causes of autism:
Autism Result Of Scores Of Genetic Mutations, Researchers Say
By SHAUN HEASLEY
June 9, 2011 Text Size A A
Hundreds of spontaneous gene mutations may be responsible for the development of autism in families without a history of the disorder.
In three studies published Thursday in the journal Neuron, researchers from Yale University, Columbia University and Cold Spring Harbor Laboratory in New York looked at gene analyses from over 1,000 families where one child had an autism diagnosis but the parents and the child’s siblings did not.
They found that children with autism had more copy number variants, or sections of DNA that are duplicated or missing, as compared to their siblings without the disorder. The gene variants were wide-ranging, but were involved in the formation of synapses which are responsible for communication in the brain and other parts of the nervous system.
“The diversity implies that a treatment for one form of autism may have no value for the majority,” says Dr. Michael Wigler of the Cold Spring Harbor Laboratory who led one of the studies. “This type of knowledge is a critical first step in developing novel treatment approaches.”
In addition, the researchers found that a greater number of gene variants seemed to be required in order to trigger autism in girls, which could help explain why the developmental disorder occurs more frequently in boys than girls.
One group of genes proved to be of particular interest to researchers because their addition or deletion resulted in two opposite phenomenon. When extra copies of this group were present, the genes triggered autism. But when this group was missing, Williams syndrome occurred, a condition characterized by extreme sociability and friendliness.
“This relatively small genomic interval clearly holds important clues to understanding the social brain,” said Dr. Matthew W. State from Yale University who led one of the studies.
Autism Result Of Scores Of Genetic Mutations, Researchers Say
By SHAUN HEASLEY
June 9, 2011 Text Size A A
Hundreds of spontaneous gene mutations may be responsible for the development of autism in families without a history of the disorder.
In three studies published Thursday in the journal Neuron, researchers from Yale University, Columbia University and Cold Spring Harbor Laboratory in New York looked at gene analyses from over 1,000 families where one child had an autism diagnosis but the parents and the child’s siblings did not.
They found that children with autism had more copy number variants, or sections of DNA that are duplicated or missing, as compared to their siblings without the disorder. The gene variants were wide-ranging, but were involved in the formation of synapses which are responsible for communication in the brain and other parts of the nervous system.
“The diversity implies that a treatment for one form of autism may have no value for the majority,” says Dr. Michael Wigler of the Cold Spring Harbor Laboratory who led one of the studies. “This type of knowledge is a critical first step in developing novel treatment approaches.”
In addition, the researchers found that a greater number of gene variants seemed to be required in order to trigger autism in girls, which could help explain why the developmental disorder occurs more frequently in boys than girls.
One group of genes proved to be of particular interest to researchers because their addition or deletion resulted in two opposite phenomenon. When extra copies of this group were present, the genes triggered autism. But when this group was missing, Williams syndrome occurred, a condition characterized by extreme sociability and friendliness.
“This relatively small genomic interval clearly holds important clues to understanding the social brain,” said Dr. Matthew W. State from Yale University who led one of the studies.
Wednesday, June 8, 2011
A Self Directed Life Facebook Page
There is now another way to link to this blog and read the latest posts. A Facebook Page has been set up and comments on the wall are encouraged. Tell me what posts have been useful or interesting, and what topics you would like more information about! Share the Blog with anyone who might benefit from the information. That is what this is all about.
Tuesday, June 7, 2011
The Miracle League
I came across this story accidentally and it brought tears to my eyes. The crazy thing is that the project is happening less than a mile from my home, and I had no idea that it existed until now.
The Kiwanis Club of Bethesda is trying to build a baseball field for disabled children and young adults. They believe that every child deserves a chance to play baseball. The project is called the MIRACLE LEAGUE.
They are are "building a specially equipped baseball field that will give mentally or physically challenged children the recreational opportunity they deserve. Construction of the field requires special design, specifications, and details to be accessible to disabled children." They "are in the process of raising the funds to build this field; hopefully by the spring of 2010." (As of this date, the project is progressing but is not completed yet)
The Miracle League will give these children the opportunity to get out in the sunshine, and enjoy playing the game of baseball in its purest form. It is the first of its kind in Maryland and will serve children in Montgomery County, the surrounding counties, DC, and Virginia.
The Miracle League Field will be located in the South Germantown Recreational Park off
Schaeffer Road, directly across from the soccer complex."
"During each Miracle League game, each child will have a chance at bat and to score a run. Miracle League team members will be assigned buddies who will assist them in hitting the ball and “running” the bases. Fellow schoolmates, members of Kiwanis Key Clubs, college students, business leaders or anyone who wishes to volunteer their time, will be enlisted as buddies to give each child the gift of baseball."
To read more about the project, copy and paste this URL:
http://miracleleaguemontcomd.com
The Kiwanis Club of Bethesda is trying to build a baseball field for disabled children and young adults. They believe that every child deserves a chance to play baseball. The project is called the MIRACLE LEAGUE.
They are are "building a specially equipped baseball field that will give mentally or physically challenged children the recreational opportunity they deserve. Construction of the field requires special design, specifications, and details to be accessible to disabled children." They "are in the process of raising the funds to build this field; hopefully by the spring of 2010." (As of this date, the project is progressing but is not completed yet)
The Miracle League will give these children the opportunity to get out in the sunshine, and enjoy playing the game of baseball in its purest form. It is the first of its kind in Maryland and will serve children in Montgomery County, the surrounding counties, DC, and Virginia.
The Miracle League Field will be located in the South Germantown Recreational Park off
Schaeffer Road, directly across from the soccer complex."
"During each Miracle League game, each child will have a chance at bat and to score a run. Miracle League team members will be assigned buddies who will assist them in hitting the ball and “running” the bases. Fellow schoolmates, members of Kiwanis Key Clubs, college students, business leaders or anyone who wishes to volunteer their time, will be enlisted as buddies to give each child the gift of baseball."
To read more about the project, copy and paste this URL:
http://miracleleaguemontcomd.com
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