5 Things You Should Know About Families Dealing With Disability

Written by Jaimie Davis Smith
(This story is from the Huffington Post)

Disability is part of my family’s daily life and it has been since my oldest daughter was born with a chromosomal abnormality over seven years ago. My daughter’s genetic disorder resulted in a variety of disabilities, both cognitive and physical, that impact nearly every aspect of our lives. Usually we go along with our routine, but sometimes I am struck by how little others know about disability and what life is like for us. I have been reminded of this recently and wanted to share five things I wish everyone knew about disability.

1. We really, really dislike the word “retarded.” Please stop using it. Now. The r-word is loaded. It is pejorative. It is hurtful. For those of us with loved ones with cognitive disabilities, the use of the r-word turns them into lesser beings not worthy of the same dignity and rights of those not struggling with the same difficulties. Not everyone has thought about how using the r-word impacts those of us dealing with disability. I get that. But if we try to explain it to you please listen to why it is not okay to use the r-word even if, as I was told recently you “didn’t mean it that way” by a woman who then stormed off somehow angry with me for trying to explain to her how her use of this hateful term impacts my daughter and my family.

2. Some disabilities are invisible. It would be convenient if everyone that disability made it obvious to the rest of the world in some way. Individuals who have visual impairments often use white canes or seeing eye dogs to help them navigate the world. Everyone knows that a wheelchair indicates that someone does not have full use of their legs. But, the person dealing with muscle weakness who can walk, albeit with difficulty, may look completely capable to a casual observer. The child who has autism and deals with sensory issues may look like a typically developing child having a bad day or a brat to you. A child with no obvious differences may have an oxygen monitor or feeding tube tucked away under clothing. But, these disabilities are real. They make life difficult, often on a level unimaginable to most. Remember that the next time you think someone is “faking” a disability for some perceived advantage, whether it’s a parking spot closer to the door or skipping the line at Disney World. Most individuals with disabilities you cannot immediately recognize would gladly give up the small accommodations for which you may resent them if they could also give up the disability that entitles them to these accommodations in the first place.

3. It’s okay to ask questions when disabilities are visible. My daughter uses an adorable wheelchair. Not all wheelchairs are cute, but hers is sky blue with a rainbow embroidered on the seat and has front wheels that light up if you push it fast enough. To other children it looks like a fun ride. Kids point at it on the street. They ask for rides. Usually, their parents try to shush them and pull them away. Well, guess what? I know that my daughter is in a wheelchair. She’s been using it for years. When she’s in it, it’s clear to everyone that she has a disability. I don’t mind questions. In fact, I encourage them, especially from other children whom I often allow to push my daughter’s wheelchair a short distance to remove the mystery surrounding disability. I welcome the opportunity to explain to children that some people are just born differently. I don’t mind discussing disability with adults who may wonder about our circumstances. It is only through open dialogue and communication that we can educate others about disabilities of all types and promote acceptance.

4. We are not heroes. Families that include a loved one with a disability often hear that they are amazing or that others don’t know how they handle it all. But, the thing is, backing out is not an option. We did not take on a burden out of altruism. We deal with the circumstances we have been dealt because we have to, because we have no other choice. We deserve no special credit for this. I have no doubt that most of the people who make these statements to me would do the same if they were in my shoes. They wouldn’t have a choice.

5. Be considerate. You can try to step into our shoes and not impose your own rules on us. It’s not difficult to figure out some things that might make life easier for people with disabilities. But, sadly, most businesses and even schools and churches do not take the steps needed to welcome individuals with disabilities, such as installing ramps or elevators, until they are legally required to. If you want to be better, you can take small steps even when they are not legally required. You could open the door for a mother pushing a wheelchair even if it will delay you by a few seconds. You could ask your child to let a child with disabilities take a turn on the swing since it may be the only piece of playground equipment she could use. You can respect measures that have been put into place to help those with disabilities and their families by not sitting in clearly marked movie theater seats that have been especially designed to accommodate adaptive equipment. You can let the individual in the wheelchair on the elevator first, even if you have been waiting longer. The mother at my son’s school was certainly not considerate when she told me recently that a handicapped parking space could only be used by a family with a child with disabilities who attended that school — and not by a parent with disabilities or a family who may need to bring along a sibling with disabilities to drop-off. Imposing arbitrary, uninformed opinions about who “really” has a disability or need for accommodation is hurtful and harmful, especially when expressed in front of children who are still forming their opinions about disability and may be unsure how to react themselves.

 

Seeking Volunteers for Annual TASH Conference

TASH Conference "A Movement United"The Annual TASH Conference themed, “A Movement United” is fast approaching.  TASH is seeking volunteers to help during the conference. . The conference will be held December 11-14 at The Hilton in downtown Chicago.  Volunteers are eligible to receive 80% off their full conference registration.

 The TASH Conference is the one place where stakeholders from every aspect of the disability community come together to learn, share and grow in our collective effort to advance inclusion and human rights for people with significant disabilities.For more than 37 years, the TASH Conference has impacted the disability field by connecting attendees to innovative information and resources, facilitating connections between stakeholders in the disability movement, and helping attendees reignite their passion for the full inclusion of people with disabilities in all aspects of community life. 

Volunteer Information:

Volunteers are eligible to receive 80% off their full conference registration.

  • Anyone interested in signing up for volunteer shifts must apply using our online form: https://edtash.wufoo.com/forms/k7x3p3/
  • Volunteers who wish to receive a registration discount must commit to at least 10 hours of volunteer work at the TASH Conference.
  • Once a volunteer signs up for at least 10 hours on the volunteer schedule, they will receive a discount code for 80% off their full conference registration.
  • All volunteers are required to be TASH members or pay for their $30 basic membership in addition to the discounted registration fee.
  • After November 15, the volunteer schedule will be locked and finalized.
  • All volunteers are required to attend the volunteer orientation on Tuesday December 10, 2013.
  • Questions about the program need to be directed to conference@tash.org or (202) 540-9015.

Volunteer opportunities for one day attendees:

  • Volunteer opportunities are also available for individuals with disabilities who can only attend one day at the conference.
  • Individuals with disabilities who commit to 4 hours of volunteer work will receive 80% off the one-day rate and can then attend the rest of the conference events and activities on the day their shift.

We recommend that you review the conference program before choosing the times you would like to volunteer: http://conference.tash.org/

 

11th Annual Transition Summit for High School Students with Disabilities – Nov. 16

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The 11th Annual Transition Summit for High School Students with Disabilities

 

Students at MOPD Transition Summit 2013

Mayor’s Office for People with Disabilities Photo. MOPD Transition Summit 2013

The Summit will include workshops on vital Work Incentives available to youth with disabilities, individual consultations with SSA-certified specialists whose primary function is to meet with students and/or their parents on an individual basis, meet with the Social Security Administration staff specifically assigned to work with this program, as well as the Plan for Achieving Self Support (PASS) Specialist.

Employment Services Unit Work Incentive Planning and Assistance Program
Date:   Nov. 16 –  Check-in: 8:30 A.M.  – Program: 9:00 A.M.—1:00 P.M.
Location: 2102 W. Ogden Avenue, Chicago, IL 60612

Please call to register and request a Reasonable accommodation:

Ph: 312-746-5743

TTY: 312-746-5713

Fax: 312-746-5749

Co-Sponsored by PACE and the Social Security Administration

 

Lunch and Learn Webinar: Skills For Effective Parent Advocacy

Collage of diverse familiesTired of getting the run-around while wading through an alphabet soup of acronyms and not being sure of what you can and should do to help your child? Skills for Effective Parent Advocacy will provide you with these important tools: •Going from Frustration to Power; •Who is an advocate and why be an advocate? Learn six skills to follow to effectively advocate for your child.

Skills for Effective Parent Advocacy

Parents at trainingTired of getting the run-around while wading through and the alphabet soup of acronyms and not being sure of what you can and should do to help your child? This workshop will provide you with these important tools: •Going from Frustration to Power; •Who is an advocate and why be an advocate? •Follow six skills to effective advocacy.

 

Navegando el Proceso del IEP Y Consulta Individual con Maria Castillo (Español)

Special Education TrainingEste taller incluye información sobre las normas y reglamentos relacionados con la creación del Programa de Educación Individualizada (IEP). ¿Quién es elegible para un IEP? ¿Qué dice la ley federal (IDEA) sobre el IEP? ¿Cuál es el propósito del IEP? Quien está en el equipo del IEP? ¿Qué debería incluirse en el IEP?

Transition to Post Secondary Education, Employment and Community

Mom and DaughterThis training discusses Transition to Post Secondary Education, Employment and Community life and how families can work with their child’s IEP Team to insure their child has a meaningful transition plan. We will focus on the following:

  • This training adult life/post-secondary education,
  • Identifying outcomes and,
  • Developing transition-related goals as part of the IEP process.

Parents and young adults will become knowledgeable regarding resources in the community in order to build linkages, and ensure a dignified life as a contributing citizen.

Procedural Safeguard (PHONE)

FRCD Phone Trainings

FRCD Phone Trainings

Procedural Safeguards of IDEA This one hour phone training defines procedural safeguards under IDEA, prior written notices, evaluation procedures, parent participation in the IEP meeting, and placement procedures.