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5 Things You Should Know About Families Dealing With Disability

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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.

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