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Disability tipsheet

March is Disability Awareness Month

FOR IMMEDIATE RELEASE
Feb. 27, 2007

EDITORS: The following Indiana University professors are available to discuss key issues in disability rights and care. Contact information is listed for each faculty member below.

Speaking of disabilities: Find the right words
Siblings of children with disabilities
Transitioning to adulthood
Students tackle issues of discrimination at new Disability Law Clinic

Speaking of disabilities. "People first" is the most important principle in communicating with and about people with disabilities, said Vicki Pappas, director of the Center for Planning and Policy Studies at the Indiana Institute on Disability and Community. This standard applies in a literal sense when describing people -- "person with autism" is appropriate; "autistic person" is not -- and in a figurative sense when interacting with someone who has a disability. "People with disabilities would prefer to be seen as people, not as objects of pity or as heroes who have overcome adversity," she said. "When you meet someone who has a disability, say hello, make eye contact, and give yourself time to get to know that person like you would with any new acquaintance." Below are more of Pappas's tips for effective communication.

  • DO use person-first language, especially in print. Regardless of the particular disability, put the person before the condition in every description. For example: "man who has cerebral palsy," "girl who is deaf," "teacher with epilepsy."
  • DON'T mention a disability if it is not relevant. "If you are writing an article about a professor's research, and that person happens to use a wheelchair, you don't need to mention it unless it relates somehow to the research process. This is just the same principle you would use in deciding whether to mention that someone is Jewish or Latino," Pappas said.
  • DO use specific terminology. If it is important to describe a person's disability, be straightforward and avoid terminology like "handicapable," "differently abled" or "special." This type of verbiage comes across as condescending, Pappas said.
  • DON'T make someone a hero for an ordinary feat. Avoid characterizing everyday activities as huge accomplishments for people with disabilities. "I'm all for including a bride with hearing loss in a wedding special, but when the headline is 'Deaf Woman Gets Married,' that's insulting," Pappas said.
  • DO greet people at their eye level. When talking with a person who uses a wheelchair, it is appropriate to sit or crouch down in order to talk face-to-face, Pappas said. "Even if you are speaking through an interpreter, it's important to make that direct eye contact," she said. Similarly, it is best to approach a person who is blind by announcing your presence.
  • DON'T worry about common phrases. "It is not a big deal if you say 'See you later' to someone who is blind. No one is going to be offended by these types of expressions. Relax and use your natural manner of speaking," she said.
  • DO respect personal space. "It's okay to offer assistance in a polite manner such as holding a door open. Beyond that it is best to ask first rather than to rush in and grab a person who appears to be struggling," Pappas said. A final note on personal space: a wheelchair should be approached as though it were part of the body -- don't sit or lean on someone's wheelchair unless you know them very well.

Pappas can be reached at 812-855-6508 or pappas@indiana.edu.

Siblings of children with disabilities. Non-disabled children may feel overlooked when much of the family's time is devoted to caring for a child with a disability. "Often, siblings are dealing with emotions that are difficult to talk about such as guilt, jealousy and feelings of inadequacy," said Sharon Hauss, a family support specialist with the Indiana Institute on Disability and Community. "Being aware of the needs of siblings can help improve relationships and the whole family's peace of mind," she said. Below are her tips on helping siblings feel included and valued.

  • Keep siblings informed. "Parents can help reduce stress and anxiety by keeping siblings in the loop about their brother's or sister's disability and being willing to answer their children's questions," Hauss said.
  • Encourage emotional expression. "It may be difficult for children to express their worries and fears about their sibling's disability. It can take a lot of courage to bring up the topic and reveal their feelings about it. It's important to be supportive when siblings want to talk, even if they have negative things to say," she said.
  • Let siblings choose whether to be involved in caregiving. "Often, siblings of children with disabilities want to help and be involved with meeting the needs of a sibling with a disability. It is important that siblings feel included -- but they should not be forced to take on the role of caregiver," she said.
  • Attention and rewards. Remember to acknowledge milestones and achievements for children without disabilities. Sometimes the accomplishments of children without disabilities go unnoticed because normal development is expected, Hauss said, but celebrating and rewarding progress is important for all children. She noted that one-on-one time with parents also is essential.
  • Make connections with other siblings. "Sometimes the best support is found by making connections with others in similar situations. Siblings may find it easier to talk about their concerns and feelings with others who have siblings with disabilities," she said. Computer-savvy kids can check out the Sibkids Listerv, an online resource to help young siblings of children with disabilities connect with one another: http://www.siblingsupport.org/connect/index_html.

A more in-depth resource on this topic is available from the IIDC at http://www.iidc.indiana.edu/irca/family/SibPerspect.html. Hauss can be reached at 812-855-7037 or sahauss@indiana.edu.

Transitioning to adulthood. Families of children with disabilities need to think ahead about life after high school, said Teresa Grossi, director of the Center on Community Living and Careers at Indiana University's Indiana Institute on Disability and Community. "Losing the structure of the school system can be extremely difficult for families of children with disabilities, so it is crucial to consider what the next step will be and what kind of supports your individual child will need," she said. Below are her suggestions on planning for each child's transition to adulthood.

  • A vision of the future. "Start thinking early about where your child will be in the years after high school," Grossi said. "Will he or she be going on to a two-year or four-year institution, or transitioning directly into a the workplace? Will significant, ongoing supports be necessary or will occasional guidance from a counselor be enough? Once you have the vision, you can start 'backward planning' -- thinking about what it takes to prepare for each milestone until you can identify a first step you can take today."
  • Never too early to start planning. Waiting lists for adult support programs are incredibly long. Grossi advises applying for these state supports when a child enters preschool or early elementary school to improve the odds that funding and supports will be accessible when the student finishes high school.
  • Dream big. "Encourage your child's interests and dreams. Instead of saying that a goal is unrealistic, give your child the tools to research what it takes to achieve that goal and evaluate whether it is within reach." Grossi used the example of a child who dreams of being a veterinarian. "Help your child look up the curriculum for a veterinary degree and what sort of prerequisites he or she would need to take in high school. It may turn out that these subjects are not strong points for your child, but that opens the door to look into other job opportunities that involve working with animals, and starting to identify the type of supports and accommodations that may be needed." Grossi also advised ensuring that students explore a variety of options before choosing one career path.
  • Self-determination skills. Parents can encourage independence and self-sufficiency by helping children build "self-determination" skills, Grossi said. This attribute incorporates abilities in problem-solving, decision-making, goal setting and self-advocacy. "Building self-determination starts at a very young age by giving your child responsibilities, such as household chores and decision-making roles. It also involves making sure your child understands his or her disability and knows how to ask for supports. In many cases, by high school age it is appropriate for the child to take over the role of talking to the teacher about classroom accommodations."
  • Consider the culture. "When we think about what we expect from young adults with disabilities, it's important to consider how young adults without disabilities are doing in terms of achieving independence and finding meaningful employment," Grossi said. "In our culture, in general, it's taking students longer to finish college, longer to achieve financial independence and longer to move out of their parents' homes. We should be careful not to place unreasonably high expectations on children with disabilities when the larger cultural trend is toward an extended adolescence."

Grossi is also a professor of special education in IU's School of Education. She can be reached at 812-855-6508 or tgrossi@indiana.edu.

Students tackle issues of discrimination at new Disability Law Clinic. Poor people with disabilities face a number of challenges to full participation in society. Often, they are forced to deal with advocates, bureaucrats and decisionmakers who are insensitive to -- or fearful or ignorant of -- their individual situations and needs, according to Carwina Weng, associate clinical professor at the Indiana University School of Law-Bloomington. Weng also directs the law school's newly established Disability Law Clinic. At the new clinic, which began this semester, students are learning to work with individual clients and disability rights groups to address issues of discrimination and to access benefits and services designed to assist poor people with disabilities. The Disability Law Clinic provides a structured educational and work experience to second- and third-year law students interested in working with people with disabilities. Students are assigned to be the primary case handlers for their clients and engage in all stages of case development, from intake to appeals. They help to address the dual problems of poverty and disability by helping low-income clients obtain or maintain Social Security and Medicaid disability benefits. They're also figuring out answers to key questions facing poor people with disabilities, Weng said, such as "How can [poor people with disabilities] get needed health care without insurance? How can they prove entitlement to disability benefits without medical records? How can they afford food, clothing and shelter without a job?" Weng came to Indiana Law from Boston College where she served as a clinical professor at the Legal Assistance Bureau in Waltham, Mass. Prior to her position at Boston College, she was a staff attorney at Greater Boston Legal Services. There, she worked with the domestic violence programs at six area hospitals, supervised a divorce work group and represented victims of domestic violence in abuse prevention and family law litigation. She can be reached at 812-855-9809 or wengc@indiana.edu.