Tuesday, November 24, 2009


By Keith Hosey

“In the end, we will remember not the words of our enemies, but the silence of our friends.” - Dr. Martin Luther King, Jr.

I’d like to preface this blog post with two things about me. The first is that I don’t, and never will, understand why or how one human being could ever treat another human being with complete intolerance based in the simple fact that they differ in some way. This isn’t just disability related, but race, religion, sexuality, etc. The second is that about ten years ago I made a conscious decision to strike words that hurt other people out of my vocabulary. This included many commonplace phrases in the English language that were in some way originally based in some type of prejudice. You may say, “So what? I wouldn’t use them in the first place”, but when’s the last time you called something you didn’t like “gay” or maybe insinuate that a cheap friend was of a certain religious denomination? Never?

I recently became aware of the campaign to stop the use of the “r-word” by the Special Olympics, “Spread the Word to End the Word” (www.r-word.org). This is a word that I have in the past used regularly and recklessly. When I stumbled upon this campaign I was floored. My heart dropped into my toes and I wondered how could I have ever overlooked the power and pain of this word? I work with people with intellectual disabilities and their families. People who I consider good friends have relatives with intellectual disabilities. I have relatives with intellectual disabilities. How did I rationalize this unacceptable use of language?

I sifted through some online articles, blogs, etc. and stumbled upon the term ableism (the term for prejudice against people with disabilities). I’ve been reading a lot of stuff out there about the topic of ableism, the good, the bad and the ugly. For every article or blog post talking about ableism, there were 10-100 responses and comments ranging from the too common sentiment of “political correctness has gone too far if we have to watch what we call these people” all the way to very shocking hate language that I choose not to repeat here.

Why is it so much more socially acceptable to discriminate against people with disabilities than other minority groups and why is it ok for most of society to ignore that discrimination? It’s 2009 and I’ve seen a political campaign mocking their opponent’s speech impairment, celebrities and comedians throwing the “r-word” around because they think it’s a victimless crime. It’s every day. Fifty-five years after “separate is not equal,” students with disabilities are still segregated. If we can’t teach equality in grade school, how can we achieve it as adults?

In my search for answers, I asked a family friend about his childhood in Kentucky and how he could do nothing while segregation occurred. He told me that while he didn’t necessarily think it was right, “it’s just how it was” and what could he have done about it. His answer was honest and simple and helped me frame the essence of bigotry better in my mind. It’s easier to go with the group-think, the status quo, isn’t it? It gives us a sense of belonging. Norman Kunc, a disability rights activist, once said about prejudice’s role in that sense of belonging “if I hate the same guy you hate, we must be friends.” So if our first African-American President can make a joke about the Special Olympics, then I should feel better about laughing at people with disabilities?

But I think there’s light and hope at the end of the tunnel. History has shown that acceptance of people with disabilities increases every time there’s an influx of wounded warriors in this country. We have many brave men and women returning from war with disabilities and it is our duty to make sure we welcome them with compassion and respect and to ensure they have an equal seat at the table. We have the new Hate Crimes Act protecting individuals with disabilities (recent studies have shown that People with disabilities over the age of 12 are 50 percent more likely to experience nonfatal violent crime than those without disabilities). Progress to equality marches on.

You and I can be part of that guiding light of tolerance and acceptance at the end of the tunnel, too. In a film called Including Samuel (a child with Cerebral Palsy) Samuel’s mother says, “I can’t believe that I was so blind… there was this huge amount of prejudice going on and I never noticed it before… and now I can’t believe that not everybody sees it.” Whether you are one of the 20% of Americans living with a disability, or non-disabled, watch your language and actions and think about the people it hurts. Don’t stop with yourself, do your part to end ableism by speaking out against others words and actions, don’t be silent.

Here is an additional resource on disability etiquette and words with dignity.

Monday, November 16, 2009

Ten Ways To Make Navigating The System Easier

By Barbara Davis

In today’s economy, more people without jobs are feeling the need to jump through a variety of hoops in order to get financial assistance, housing, food stamps and other services. This can be an overwhelming and frustrating process for anyone. For individuals with disabilities or the parents of young children with disabilities it can be a nightmare. The application process for disability benefits, health care, accessible housing, attendant care, housekeeping assistance, various therapies (speech, occupational, physical and counseling) and other services can be extremely daunting. Add the hassle of getting accommodations for appointments into the mix and well, it’s not a pretty picture.

With a little creativity and some planning, there are ways to make this process easier.

Get a loose-leaf binder and fix it up so that you can put everything you need in one place

Create pockets to hold envelopes and stamps to be used for mailing completed forms. Use sheet protectors for documents such as birth certificates, shot records, school records and others. Keep a calendar for tracking appointments and an address book (with phone numbers and addresses of schools, service providers, etc.) in the binder also. Include a notebook in your binder for writing questions you may have or information you need to remember. If you have more than one child, or you are receiving multiple services, keep several of these binders on hand.

Rely on 211 if it is available

If you are a “systems navigator veteran” you may think you are fully versed on programs, services and resources in your area. However, new services are often added and old ones are sometimes dropped when funding ends. Newbies to the system may not have a clue where to start. Using 211 can be a lifesaver for both “veterans” to the system and newbies.

Join Support Groups

Long-term members of support groups have become experts at navigating the system and finding resources for themselves or their families. They can help newbies and each other find appropriate health care providers, support services, recreational activities and resources. If you are a parent of a child with disabilities, joining a support group specific to your child’s disability can provide information and support to help with schools, healthcare, locating adequate daycare, and many other issues. Adults often find such support groups to be beneficial socially as well, which can be a great stress-reliever in these difficult times.

If possible, set aside the same day each week for appointments

It will be much easier to make, remember and keep appointments if all of your appointments are on the same day of each week, or the same several days, if necessary. For example, if your parent/teacher conferences usually get scheduled on Fridays, try to schedule all appointments on Fridays. If you have to take your kids for their allergy shots on Monday, Wednesday and Friday afternoons, try to schedule other appointments for earlier on one of those days. Obviously it may not be possible to always schedule appointments this way, but the more often you can do it, the easier it makes it for you.

If there is an overwhelming amount of paperwork to be completed at the same time for different service providers, work a little bit on each form, every day, until it all gets done

Most paperwork will be redundant. Nearly all of them will want your social security number, birthdates, physicians’ names and addresses, your name, address, and phone number, and the same information for other members of the family. If you allot yourself a certain amount of time each day, you can easily select sections of each form to complete. On the first day you can complete the sections requiring information you can retrieve from memory. During the ensuing days, you can pick sections requiring you to look up information, such as previous hospital stays. Work in this way until you get all the forms completed and in the mail.

Keep copies of all completed forms

If you have to look up your bank account number, your doctor’s address and phone number, or any other piece of information in order to complete a form, keep a copy of the form in your systems binder. By doing this, you will save yourself from having to look up the information again for another service application. If you are lacking in organizational skills, ask a family member, friend or caseworker who is organized to keep copies for you.

Be a packrat for awhile

You never know when a service provider is going to want your child’s shot records from five years ago, or your income tax papers from three years before. It pays to keep any of these types of documents on hand for at least five years or longer. In some cases, such as with school transcripts, you may want to keep the documents permanently.

Be cautious with your systems binder

Whether you keep a systems binder or not, chances are you will be carrying documents with sensitive information from place to place. Keep in mind that most of these forms and documents will contain your social security number and birth date. Keep these documents in your sight at all times when you are away from home. In the home, keep them in a safe place, preferably one with a lock on it.

Let Google be your friend

The internet is an excellent source for looking up directions, addresses, phone numbers and websites for service providers. In many cases, forms, documents and applications can be printed off of these websites. If you MapQuest any directions to a service provider, print them out to keep in your systems binder for future reference. You will also want to print out the instructions and regulations found on the website for the service you are applying for, and store these in your binder.

Delegate some of the load to others

If you are truly overwhelmed, ask a friend, family member or case manager to help you. Case managers and social workers have been instrumental in helping me to complete a mountain of forms. My grandmother kept my sons occupied while I completed forms, and friends provided sound advice on what to write on the forms. In my experience, everyone was more than happy to help. By accepting this help with gratitude, I was able to get through the process much more smoothly than I would have on my own.