BUILDING FAMILY PARTNERSHIP BY UNDERSTANDING AND SUPPORTING FAMILIES OF CHILDREN WITH DISABILTY
TABLE OF CONTENTS
2. Crisis stages experienced by families with an
intellectually disabled member.
3. Family Stress Factors
4. Suggestion to families
5. Suggestions to parents
6. Parents: Welcome members of the
7. Parents schools of excellence
8. School, family and community partnerships
9. 10 Ways for parents to help teachers
10. Crime victims with disabilities and their families
Parenting is one of the difficult jobs that parents come across in the course of their life as they encounter a multitude of emotions and incidents when rearing their children. It is one of the most beautiful experiences in the world but sometimes parents are pestered by extreme feelings of guilt, doubt and incompetence despite being not in the face of harsh reality. Particularly this feeling is enhanced if child is born with a disability:
Be it intellectually impaired, hearing impaired, visually impaired or physically disabled.
Just as the individual with disability need support, care, understanding and co operation from the society, similarly parents also need support, help, guidance, acceptance and cooperation from all to raise their child in a way which will lead to maximized enhancement of potentials of the child which will ultimately make him a useful and contributing member of the society.
Crisis stages experienced by families with an intellectually disabled member.
The life of an intellectually disabled person is one that is marked with crisis for both himself and his family. Powers and Bruey (1988) in their summary of research findings, outlined four major crisis stages experienced by families with an intellectually disabled member. These stages are roughly the pre-school going age; the school going age; adolescence and adulthood.
Pre-School Going Age
When a child is first diagnosed as having an intellectual disability, he finds that many of life's avenues are closed to him. Although this may not be fully realised immediately by his parents or caregivers, many still experience a grief of sorts - a sense of loss (Hannam, 1988) as if all their dreams and hopes for this child have come crashing down.
The initial shock can be buffered by having a supportive environment of relatives and friends, yet this is not always available for the family. The tendency to blame each other for the child's disability should also not be yielded to, as it can be very detrimental to the spousal relationship.
Sometimes the manner in which the parents were informed of the child's diagnosis can either facilitate acceptance or rejection. Yes, bringing bad news is not an easy task but doctors and other health care professionals need to be more informed in this area. Although, there is no perfect way to break the news, they need to be both comprehensive in the provision of information and also supportive. Usually, parents would benefit if a follow-up is done by the doctor or health care professional concerned. Making an immediate referral to the correct agency to provide further services to the child would also be very beneficial for both the family and the child.
Many parents are anxious to provide their child with early stimulation. This is necessary to give the child the extra push needed in his already delayed development. Unfortunately, to be enrolled in such services sometimes seem like a "luxury". This is because of the scarce resources available for this purpose. Sadly, if parents cannot afford a private tutor or other therapies for their child, he would be left to his own devices at home. In this area, organisations serving the intellectually disabled such as MINDS, can provide consultation and supportive services to these parents. Such services will enable them to train and cope with their intellectually disabled child.
Siblings of the intellectually disabled person experience a certain amount of stress too. Sometimes they may perceive their parents as being neglectful of their needs. This happens when parents do not see the problems faced by them as the whole family's problem. Hence, their efforts to help their disabled child would usually exclude the involvement of their other children. Professionals working with the families have thus seen the importance of including siblings in the home training programme (Lobalt and Ricardo, 1988).
School Going Age
This marks another period when the parents experience another crisis as they further realise the impact of their child's disability. In my ten months at MINDS, there were no less than ten parents who complained that their children were rejected from the various kindergartens because their children "looked disable". Of course, there were also those who were rejected because their hyperactivity was beyond the control of the kindergarten teachers.
The impact is further experienced if the child has cousins or friends in the same age group. Parents will start to realise that their children may not make it through the first year as successfully as the others.
If the child is constantly being compared with other children, he may develop an unhealthy inferiority complex about himself. Sometimes, because of the pace of his learning, he is also labelled as "stupid". The intellectually disabled person may not be able to understand abstract concepts but he is definitely able to feel.
Very often the child with an intellectual disability is further disabled by an overprotective environment. If a child is not made to feel he necessity of learning or doing things for himself, he will always depend on his caregivers. Usually, parents who overindulge the intellectually person see their acts as forms of love. The problem will be heightened once they are old and find themselves incapable of meeting all the basic needs of their disabled child.
The intellectually disabled person is usually viewed as one who does not reach maturity in all areas of life. As such, parents and professionals may forget that they do develop sexually. Unlike their non-disabled counterparts, they do not have the ability to read books to help themselves understand the bodily changes that take place. So when they begin to express their sexual feelings and desires, it is usually done inappropriately. Though stories of some masturbating in public places, touching the genitals of others, etc. are true, these are not signs of a sex pervert and should not be construed as such, only as feelings inappropriately expressed.
Parents of intellectually disabled females often worry about the possibility of their daughters being taken advantaged of. With the advancement made in the medical field, there are means to arrest the ovulation process. Some parents resort to ligating their daughters. The present special school curriculum does not consciously include sex education.
Indeed the sexuality of the intellectually disabled is a difficult issue to handle for both parents and the professionals involved. If a child can learn socially acceptable ways to eat, walk and talk, would not he likewise learn socially acceptable ways to express his sexuality? The difficulty then does not lie with the intellectually disabled person but with our attitude towards their sexuality.
If the person has serious behavioural problems, parents soon begin to realise that their old methods of physical restrain will no longer be effective as the child has grown in both size and strength.
When other parents are preparing for the marriages of their adult children, parents with anintellectually disabled person once again are faced with the reality of the person's disability. Marriage is not considered an alternative for the intellectually disabled person. But what about encouraging companionship among the intellectually disabled?
Unlike their non-disable peers, many families with an intellectually disabled member also begin to worry about future care arrangements. As this would not only affect the future of the intellectually disabled but also that of the other family members, it would be wise to plan well ahead. With improved health conditions, the intellectually disabled person can be expected to live as long as his non-disabled peers. Hence, parents may need to accept the fact that he may have to lead a life without them, and alternative forms of accommodation for the future has to be looked into.
The life of an intellectually disabled person is indeed difficult both for himself and his family. However, such difficulties can be reduced with support and encouragement from the community at large. Meeting strangers can sometimes be quite a painful experience, not because they are intrinsically cruel or unkind but because their embarrassment and sense of inadequacy makes them hold back from reaching out (Hannam, 1988).
The important thing for everyone to remember that an intellectually disabled person is a person first, and that "being retarded is a handicap, not a disgrace" (Irene Jakab).
Family Stress Factors
The birth of a child with a disability, or the discovery that a child has a disability, can produce stress among family members. Stress can also be caused by a number of ongoing factors, or by special circumstances. Siblings need an explanation for the tensions within the family and the cause of the tensions.
Some families are stressed by the amount of financial resources required to meet the needs of the child who has a disability. Some parents may expect nondisabled siblings to accept the brother or sister with a disability as "normal." This expectation can lead to internalized feelings of anxiety and jealousy which the nondisabled sibling may be reluctant to voice. The parents, in turn, may fail to recognize the child's unhappiness and may deny that a problem exists.
During an interview with the Parent Advocacy Coalition for Educational Rights Center, Inc. (PACER), Beth, a young sibling, offered parents some sage advice:
"I think... I'd want them to understand that sometimes siblings are going to get jealous of the extra help and attention that a brother or sister who's handicapped receives. Parents shouldn't get mad about the jealousy or make the kids without a handicap feel too guilty about it if sometimes they resent the extra attention. Parents have to sit down and talk to the brothers and sisters who are nonhandicapped about what the handicap really means. Kids don't automatically understand it by themselves" (Binkard, 1987, p.5).
Nondisabled siblings may feel obligated to compensate for the child with the disability, to make up for that child's limitations. They may be acting as a surrogate parent, assuming more responsibility than would be usual in the care of a nondisabled sibling. On the other hand, siblings may help the family by providing their parents with assistance and support, which they otherwise might not have, in the care of the child with a disability. The nondisabled child may experience jealousy because he or she may be required to do family chores, whereas, the sibling with a disability is not required to do them -- despite the fact that the sibling with a disability may be unable to do them, or would have great difficulty doing them. The nondisabled sibling may resent having to integrate the sibling with a disability into the neighborhood peer group, and may experience or perceive peer rejection because of having a sibling with a disability. Finally, the nondisabled sibling may feel embarrassment because of a siblinghysical characteristics or inappropriate behavior. Essentially, parents, other adult family members, and professionals should realize that nondisabled siblings need special understanding, attention, support and recognition of their unique contributions to the family system (Powell & Ogle, 1985).
Siblings with disabilities, on the other hand, also experience stress as family members. These common stresses include frustration at not being able to make themselves understood; unhappiness at being left to play alone; irritation over constant reminders about everything; withdrawal because of lack of social skills; low self-esteem; and anger resulting from an inability to do things as easily and quickly as their nondisabled brothers and sisters. Through it all, with understanding and support, there are usually many positive interactions and normal sibling give-and-take situations from which each learns and matures.
When parents have a double standard for disabled and nondisabled children, conflicts can arise. Even though the child with the disability, in fact, may need and receive more parental attention, the amount given may be perceived as unfair by nondisabled siblings. Some parents, on the other hand, may tend to overindulge the normal sibling in an effort to compensate for a brother or sister with a disability. The normal rivalry between all siblings may cause the nondisabled sibling to perceive incorrectly that the parents favor or love best the sibling with a disability. Mary expressed the resentment she feels when her brother is dealt with lightly in comparison to her punishments:
"Nonhandicapped kids can get pushed aside when their brothers or sisters have handicaps. Andrew seems to get help naturally --it's like attention to his needs is "built into the system." I'm the bad one, but he can do no wrong. He makes all the messes, but I get into trouble if I don't empty the dishwasher." (Binkard, 1987, p.10)
Suggestions for Families
When planning for the future of the sibling with a disability, you should consider such things as mobility, social and communication skills, education, and the individual's own ideas about where to live and work. Even after careful planning and the appointment of a guardian or co-guardians, plans should be made for emergencies. A file should be kept in a safe place, known to all family members. The following ideas should be addressed when making future plans and the information should be included in this accessible file:
1. Develop financial plans for
future care. If the family is considering establishing a trust for the family
member with the disability, it should consider the incomes of the children in
the family, including the sibling with a disability. Make a will only with an
attorney experienced in devising wills for those who have an heir with a
disability. Inheritances must be treated with caution. It is especially
important to investigate the continued eligibility for certain social services
if assets from an estate, pension, or life insurance are left to the child with
2. Know your state's laws regarding guardianship and independence. Do not assume that you as parents will automatically remain your child's guardian when he or she reaches the age of majority in your state. Establish whether the sibling with a disability requires no, partial, or full guardianship. This information should be in writing, and, if possible, make contingency plans in case the first-choice guardian is unable to assume that role. Be aware of the consequences in your state of not having a guardian appointed.
3. Nondisabled siblings should know where to access the needed educational, vocational, and medical records of the disabled sibling, and be ready to anticipate his or her changing future needs.
4. Families should consider the future health of the sibling with a disability with respect to needed services and care. Parents should document where he or she can receive medical care and the financial resources and arrangements necessary for this care.
5. Families should gain an understanding of the legal and eligibility requirements of programs available to the family member with a disability. Investigate resources through government programs, such as Supplemental Security Income (SSI), Vocational Rehabilitation,
6. Families should discover the types of community resources available. The range of services and resources varies considerably according to place of residence. Keep abreast of any changes in the availability of these services. Consider the sibling's need for long-term care, as well as for employment and companionship.
7. Be aware that, as families grow and develop, the members within it change. Living with and caring for a child with a disability is different from living with and caring for an adult with a disability. Family members should continually ask themselves the following questions:
- What are the needs of the sibling with a disability?
- How will these needs change?
- What can be expected from local support groups in the community?
- What is and will be my level of involvement?
- Is the involvement financially, emotionally and psychologically realistic for me?
- How will the responsibility be shared with other family members?
- Are my career plans compatible with my responsibilities for my brother or sister with a disability?
- Will my future spouse accept my brother or sister?
The care of a sibling with a disability or chronic illness is, in large part, a family affair and a responsibility that should be shared as evenly as possible. By planning effectively for the future, parents can help ease the responsibility and the feelings of stress that uncertainty about the future can bring.
Suggestions to Parents
Parents set the tone for sibling interactions and attitudes by example and by direct communications. In any family, children should be treated fairly and valued as individuals, praised as well as disciplined, and each child should have special times with parents. Thus, parents should periodically assess the home situation. Although important goals for a child with special needs are to develop feelings of self-worth and self-trust, to become as independent as possible, to develop trust in others, and to develop to the fullest of his or her abilities, these goals are also important to nondisabled siblings.
To every extent possible, parents should require their children with disabilities to do as much as possible for themselves. Families should provide every opportunity for a normal family life by doing things together, such as cleaning the house or yard; or going on family outings to the movies, the playground, museums, or restaurants. Always, the child with the disability should be allowed to participate as much as possible in family chores, and should have specific chores assigned as do the other children.
Caregiving responsibilities for the child with a disability or chronic illness should be shared by all family members. It is especially important that the burden for caregiving does not fall onto the shoulders of an older sibling. If there is an older sister, there is a tendency in some families to give her the primary responsibility, or an excessive amount of it. Today, however, more communities are providing resources to ease the family's caregiving burdens. Examples include recreation activities, respite care, and parent support groups.
Powell and Ogle (1985) present several strategies suggested by nondisabled siblings themselves for parents to consider in their interactions with their nondisabled children. These siblings suggest that parents should:
- Be open and honest.
- Limit the caregiving responsibilities of siblings.
- Use respite care and other supportive services.
- Accept the disability.
- Schedule special time with the nondisabled sibling.
- Let siblings settle their own differences.
- Welcome other children and friends into the home.
- Praise all siblings.
- Recognize that they are the most important, most powerful teachers of their children.
- Listen to siblings.
- Involve all siblings in family events and decisions.
- Require the disabled child to do as much for himself or herself as possible.
- Recognize each child's unique qualities and family contribution.
- Recognize special stress times for siblings and plan to minimize negative effects.
- Use professionals when indicated to help siblings.
- Teach siblings to interact.
- Provide opportunities for a normal family life and normal family activities.
- Join sibling-related organizations.
Children with special needs, disabilities, or chronic illness may often need more help and require more attention and planning from their parents and others in order to achieve their maximum independence. Brothers and sisters can give parents some of the extra help and support they need; the special relationship of brothers and sisters, disabled and nondisabled, is often lifelong. This special and unique bond among siblings can foster and encourage the positive growth of the entire family
Parents: Welcomed Members of the School Community
The Sign on the Door
"All Visitors Must Report to the Schoolffice"
The Sign on the Door should be
"Welcome to our
with this message are present at every elementary school across
Many principals make it a point to tell parents that they are a child's first teacher. We try to do this at every opportunity: newsletters, parent meetings, and student functions. In doing this, it is our hope that the parents will feel more welcome to be a part of our schools and hopefully be more willing to donate their time to aid in the success of our students. But do the parents truly feel welcomed as contributors to their school community? How do we know?
Attempts are made to communicate our belief that we welcome parents, but unless we are truly willing to involve the parents in ways that show our commitment to their role in their children's education, the level of parent involvement will not be high. Section 1118 of the "No Child Left Behind" law makes an emphatic statement to schools receiving Title I funds in saying that these schools must "develop jointly with, agree on with, and distribute to, parents of participating children a written parent involvement plan."
Whether in response to the law, or not, a written parent involvement policy is needed if we are to truly mean what we say when we tell parents that they are the child's first teacher. Below are five strategies that I believe are necessary for elementary principals to consider as they reflect on proper policy and best practice for including parents in the educational process.
Work closely with parent/teacher
Of course, we can never underestimate the power of strong parent/teacher organizations such as PTAs. The parents who head these organizations typically have a firm grasp of what goes on in the school community. They can also be relied on to provide schools with a list of parent volunteers and other information relative to parent involvement. It is important for principals to include them, as much as possible
Parent Schools of
The National Parent Teacher Association has developed a Parent Involvement Schools of Excellence Certification, which recognizes schools whose parent involvement programs are based on the National Standards for Parent/Family Involvement Programs. The standards, already endorsed by nearly 100 health and education organizations, were created around the six types of parent involvement identified by Joyce L. Epstein, Ph.D. at
Schools that choose to use the following six types of parent involvement not only improve their overall perception by parents as a school partner, but also take great strides in complying with the "No Child Left Behind Law" parent involvement section. The six types of standards are:
Standard I: Communicating
– Communication between home and school is regular, two-way, and meaningful
Standard II: Parenting
– Parenting skills are promoted and supported
Standard III: Student Learning
– Parents play an integral role in student learning
Standard IV: Volunteering
– Parents are welcome in the school, and their support and assistance is sought
Standard V: School Decision Making and Advocacy
– Parents are full partners in the decisions that affect children and families
Standard VI: Collaborating with Community
– Community resources are used to strengthen schools, families, and student learning
School, Family, and Community Partnerships: Preparing Educators and Improving
A parent–teacher conference is a time when important people in a student's life can talk about how that student is doing in school. It's a chance for you to ask questions about the class or your child's progress. It is also a time for you and the teacher to work together as a team to discuss ways you both can help your son or daughter.
Whether your child is in elementary, middle, or secondary school, parent-teacher conferences are important. If your school does not schedule regular conferences, you can request them.
Teachers need your help to do a first-class job. Together, you can help your child have a great school year.
In preparation, talk to your child about the conference, and most importantly, write down questions you would like to pose to the teacher.
Schedule an appointment—A parent-teacher conference is not the only time when parents and teachers should make contact. Parents may want to schedule a special meeting with their child's teacher for a variety of reasons. If you need to set up an appointment with the teacher, make a phone call or write a quick note to the teacher, and let him or her know if you have particular issues you would like to discuss.
Talk to your child—Find out which subjects your child likes the best and the least. Ask why. Also, ask if there is anything your child would like you to talk about with the teacher. Help the child understand that you and the teacher are meeting to help him or her. If your child is in middle or high school, you may want to include him or her in the conference.
Gather input from others—If your spouse, another care-giving adult, or someone with pertinent information or insight (doctor, counselor, other guardian) can't attend the conference, ask for that person's concerns and questions before the conference.
Make a list—Before you go to the meeting, make a list of topics to discuss with the teacher. Along with questions about academics and behavior, you may want to talk to the teacher about the child's home life, personality, concerns, habits and hobbies, and other topics that may help the teacher in working with the child (e.g., religious holidays, music lessons, part-time jobs, a sick relative).
Establish rapport—As an icebreaker, take notice of something that reflects well upon the teacher. For example, thank the teacher for having made thoughtful notes on your child's homework or for the special attention in helping your child learn to multiply.
Ask questions—The questions you ask during the conference can help you express your hopes for the student's success in class and for the teacher. It's a good idea to ask the important questions first, in case time runs out. The teacher's answers should help you both work together to help your child.
If your child receives special services (e.g., gifted and talented programs, speech or occupational therapy), be sure to ask about the frequency of services and your child's progress.
Addressing problems—Parent-teacher conferences are a good time to discuss any difficulties (either academic or behavioral) a child might be having at school. When problems arise, parents will want to
Develop an action plan—If the student needs help with a behavioral or an academic issue, you and the teacher should agree on specific plans—that you both will work on—to help your child do better. Be sure you understand what the teacher suggests. If it's not clear, ask him or her to explain. Set up a way to check on your child's progress. You and the teacher can decide how best to stay in touch, such as through phone calls, notes, or additional meetings.
Ending the conference—End the conference by reviewing what you discussed and restating your action plan. This is also a good time to set up your next meeting.
Once the conference is over, you should follow up with your child as well as the teacher
When discussing the conference with the child afterward, stress the good things that were covered and be direct about problems that were identified. If an action plan is in place, explain to the child what was arranged. When an action plan is in place, consider the following:
A good way to promote a continuing relationship with the teacher is to say "thank-you" with a note or a telephone call. Continuing to keep in touch with the teacher, even if things are going well, can play an important role in helping the child do better in school. When a child knows parents and teachers are regularly working together, the child will see that education is a high priority requiring commitment and effort
teachers have written to me over the years, frustrated with how unprepared their
students are—and they don't mean academically. Chris, a kindergarten teacher,
wrote what many teachers have expressed, "I would love it if you could write a
10 tips for parents to help us teachers do our increasingly demanding job. Many
parents of children I teach have left the job of spiritual, character, and
social/emotional education to me. I can't do it all in addition to teaching
academic skills. I'm getting burned out and pretty soon won't have the energy
left to nourish one child let alone 25.
1. Create a smooth takeoff each day. Give your child a hug before she ventures out the door and you head to work. Look her in the eye, and tell her how proud you are of her. Your child's self-confidence and security will help her do well both in school and in life.
2. Prepare for a happy landing at the end of the day when you reconvene. Create a predictable ritual such as 10–20 minutes listening to your child talk about his day—before you check phone messages, read the mail, or begin dinner. That way you are fully present to listen, and your child has a touchstone he can count on between school and home.
3. Fill your child's lunchbox with healthy snacks and lunches. Have dinner at a reasonable hour and a healthy breakfast. A well-balanced diet maximizes your child's learning potential.
4. Include calm, peaceful times in your children's afternoons and evenings. Maintain a schedule that allows them to go to school rested, and if they are sick, have a system in place so they are able to stay home.
5. Remember it's your children's homework, not yours. Create a specific homework space that's clutter-free and quiet. Encourage editing and double-checking work, but allow your kids to make mistakes, as it's the only way teachers can gauge if they understand the material. It's also how children learn responsibility for the quality of their work.
6. Fill your child's life with a love for learning by showing him your own curiosity, respecting his questions, and encouraging his efforts.
7. Fill your home with books to read, books simply to look at, and books that provide answers to life's many questions. The public or school library is an excellent resource.
8. Be a partner with your child's teacher. When you need to speak to him or her in reference to a specific issue with your child, do it privately, not in front of your child. Make a point never to criticize your child's teacher in front of your child.
9. Set up a system where routine items are easily located—such as backpacks, shoes, signed notices. Create a central calendar for upcoming events to avoid the unexpected.
10. Tuck a "love note" in your child's lunch bag to let her know how special she is. Knowing they are loved makes it easier for children to be kind to others.
Crime victims with disabilities and their families
This Bulletin is a product of the Symposium on
Working with Crime Victims with Disabilities, funded by the Office for
Victims of Crime (OVC) and coordinated by the National Organization for Victim
Assistance (NOVA), on
Historically, all victims of crime have been denied full participation in the criminal justice process. Crime victims with disabilities and their families are even less likely to reap the benefits of the criminal justice system. Disability advocates report that crimes against people with disabilities are often not reported to police. Of those that lead to an investigation and an arrest, very few are prosecuted. When going through the criminal justice process, few victims with disabilities come into contact with a crime victim advocate. Often when victim services are provided, they may be inappropriate due to inadequate training of victim service providers.
The following are statistics revealed by some studies. For example, research has found that 68 percent to 83 percent of women with developmental disabilities will be sexually assaulted in their lifetime, which represents a 50 percent higher rate than the rest of the population.3 People with developmental disabilities are more likely to be re-victimized by the same person and more than half never seek assistance from legal or treatment services (Pease & Frantz, 1994). It is not just individuals with developmental disabilities who
suffer very high rates of victimization. A study of psychiatric inpatients found that 81 per-cent had been physically or sexually assaulted.4 The Colorado Department of Health estimates that upward of 85 percent of women with disabilities are victims of domestic abuse, in comparison with, on average, 25 to 50 percent of the general population.5
As with crime and crime victims, underreporting of crimes perpetrated against people with disabilities is a major problem. Currently there is no authoritative research that details how many individuals with a disability become crime victims or how many people become disabled by criminal attacks. Nor has the victim assistance field adequately identified the best practices for serving victims with unique needs or how to train criminal justice system personnel - including victim specialists - to make services truly accessible to all crime victims.
Limited information exists regarding the criminal victimization of people with disabilities, but the little that is available is horrifying in nature and scope. Joan Petersilia, Researcher and Professor of Criminology at the University of California, Irvine, stated that persons with developmental disabilities have a 4 to 10 times higher risk of becoming crime victims than persons without a disability, in her Report to the California Senate Public Safety Committee hearings on "Persons with Developmental Disabilities in the Criminal Justice System." In addition, she says, "Children with any kind of disability are more than twice as likely as nondisabled children to be physically abused and almost twice as likely to be sexually abused." Others in the crime victims field recount anecdotal experiences from their work that illustrate that crimes against people with disabilities are often extremely violent and calculatedly intended to injure, control, and humiliate the victim.
This Bulletin highlights the main discussion points and recommendations developed by the Symposium participants and seeks to encourage victim assistance program staff to take the necessary steps to better serve crime victims with disabilities in their communities.
Obstacles Unique to the Disability Community
Some of the numerous social and legal problems faced by people with disabilities can be summarized as follows:
Our society often segregates persons with disabilities through physical and social isolation, with institutionalization representing the extreme. As a result of pervasive isolation, people with disabilities may not learn about available services and resources nor are they routinely informed of rights they have by law. This is particularly true for people with more severe disabling conditions, older people with disabilities, and younger people with developmental disabilities. Indeed, many people who are chronically victimized do not even know that society condemns such predatory conduct and has tools to end and redress that wrong.
Physical Accessibility: In many instances, crime victims with disabilities do not have physical access to services. Architectural barriers in buildings and public transportation systems mean that many crime victims with disabilities cannot visit criminal justice agencies or victim assistance programs. The Americans with Disabilities Act of 1990 (ADA) addresses key issues of accessibility, but as Symposium participants pointed out, there is an extensive lack of understanding of how Titles II and III of the ADA pertain to the criminal justice and victim assistance fields. Moreover, this lack of understanding is frequently coupled with a fear that making services accessible to crime victims with disabilities will require expensive, disruptive adaptations.
Attitudinal Accessibility: Attitudes to-ward the person with a disability is as important or more so than physical accessibility. In addition to accessible physical environments, program staff must be welcoming toward people with disabilities and show in their de-meanor and in the quality of their pro-grams that they sincerely want to work collaboratively to serve the community.
Underreporting of the Crime
Underreporting of crime is a pervasive problem that the
victim assistance field is addressing on many fronts. For example, the Rape,
Abuse, and Incest National Network (RAINN) estimates that 1,000 rapes occur
every day in the
Despite progress by disability rights activists, advocacy on their own behalf is still limited. Again, just as with many crime victims, a person who wants to access criminal justice decision making processes is unable to do so without adequate tools to enable full participation.
The following three myths contribute to stereotyping which often results in discrimination against people with disabilities:
The first myth is
the perception that people with disabilities are "suffering." Rather than
extending legal rights and protections, as with other oppressed groups, a
societal response prior to passage of the
The second myth is that people with disabilities lack the ability to make choices or determine for themselves what is best for them in all spheres of life (physical, mental, emotional, spiritual, political, sexual, and financial). Although individuals with severe cognitive impairments may need greater support and advocacy services, this does not impede their ability or preclude their right to participate actively in decisions affecting their lives.
The third myth, according to crime victim advocates, is that many people in society fear contact with crime victims generally, as though their distresses are contagious. An even stronger stigma attaches to people with disabilities. Our society is not socialized to integrate differences in abilities as a part of our perception of "normality." The cultural norms for functioning include good hearing and vision, physical independence and mobility, mental alertness, the ability to communicate primarily through the written and spoken word, and physical attractiveness. Deviations from those norms tend to frighten those in the "able-bodied majority" who define the concept of normal abilities. When the two forces of stigma are joined victimization and disability attitudinal barriers to providing healing and justice can seem even more formidable.
Until recently, the crime victims movement has not worked systematically to identify issues and challenges involved in responding more effectively to victims with disabilities. Improving service delivery to people with disabilities must become a priority because the crime victims' rights movement is founded on the premise that every crime victim deserves fundamental justice and comprehensive, quality services. A primary difference for a person with a disability who becomes a crime victim, however, is that the criminal victimization frequently compounds existing problems caused by a lack of accessibility to basic social services, poverty, institutionalization, and other barriers to equal rights. A crime that would be damaging to an able-bodied person is frequently a devastating blow to a person with a disability. Indeed, for many, it is the criminal assault itself that results in a disability, when major life functions the ability to move, to communicate, to understand are disrupted temporarily or permanently.
Many people with disabling conditions are especially vulnerable to victimization because of their real or perceived inability to fight or flee, or to notify others and testify about the victimization. Frequently, because a person with a disability may be more physically frail, the victimization may exacerbate existing health or mental health problems. For those who hope that their disability may "protect" them from criminal victimization, it is shocking to learn that many criminals do not act upon a perceived "desirability" of the intended victim. Indeed, many perpetrators may be unaware that their victims have a disability. Here, the victim is truly random another one of us in the wrong place at the wrong time; although that victim's ability to frustrate the criminal's intent may be less than a person's without a disability.
Another reality is that many offenders are motivated by a desire to obtain control over the victim and measure their potential prey for vulnerabilities. Many people with disabilities, because they are perceived as unable to physically defend themselves, or identify the attacker, or call for help, are perfect targets for such offenders. People with disabilities are also vulnerable to abuse by the very professionals and other caregivers who provide them with services. Just as many pedophiles gravitate to youth-serving occupations, so do many other predators seek work as caregivers to people with disabilities. Indeed, in one survey, virtually half 48.1 percent of the perpetrators of sexual abuse against people with disabilities had gained access to their victims through disability services.2
People who are victimized are vulnerable to exacerbated suffering. Most victims will experience a sense of shock, disbelief, or denial that the crime occurred, often followed by cataclysmic emotions: fear, anger, confusion, guilt, humiliation and grief, among others. But people with disabilities may have intensified reactions because they may already feel stigmatized and often have low self-esteem due to societal attitudes. The sense of self-blame, confusion, vulnerability, and loss of trust may be exaggerated, as may be an ambivalence or negativity related to their perception of their bodies. Denial and avoidance of the need to cope with the aftermath may complicate the identification of crime victims with a disability. Some victims, particularly elderly and those with developmental disabilities, will need services designed to enhance a feeling of safety and security regarding future victimization
Our world has serious challenges. We must face them with honesty, analyze, learn from the past, then move forward. The need for change is not negotiable. We must strengthen our capacity and learn to live with differences and conflict while avoiding the tendency to slide into violence as a solution. Conflict is legitimate. We can agree to disagree. Resorting to violence is no longer viable. It will be our destruction.
We must make tough decisions and be willing to work hard. Teenage suicide, random violence, drive by shootings and gangs are simply signals of a deep social malaise that won't be cured by microwave thinking or slick packaged answers. We must think deeply. The values are clear for both individual with disability and his or her family
v Cooperation, not competition
v Participation, not coercion
v Relationships, not isolation
v Interdependence, not independence and
v Friendships and not loneliness.