Tuesday, July 26, 2005

DISABILITY and Relationships = COMMUNICATIONS

One of the most difficult areas facing those of us with a disability, and/or those of us living with a chronic illness, is COMMUNICATION!! We have to communicate with others - family, medical care, friends, strangers, etc. AND, they have to be able to communicate with us. So, the better we can communicate with others, the better off we will be in soliciting, receiving, and giving help. AND, if you are like me, you were raised to GIVE help, not to get it! You were the caregiver; being on the receiving end is very hard to do.

This blog is seperated into two distinct areas. The first is a way to assist us better communicate what is going on with us, to others. The second part is information designed to literally "hand" to others, so that they know how to communicate with us as an actual "person" and not as a "disease".

To start off, I found this great website in Australia, designed to "link" folks together who have disabilities and disability needs. The acronym used is "TEAM". It means: Together, Everyone Achieves More! I love this concept, and thought you might also.

So, how in the world do you document all about YOU?? Well, if you are intending to use the information in obtaining your disability insurances, I recommend the Workbook that we offer at www.disabilitykey.com. The attachments in the Workbook allow you to document your symptoms, and have actual examples of forms and letters that you can use in your process, as well as the actual "How-To" process.

Additionally, I havae found this fantastic website, originating from the State of Washington. It shows you a model of communicating to all about "you". Unlike the disabilitykey Workbook, it does not provide you with the actual forms. However, if you are computer-savvy enough, you can duplicate the pages yourself. Included are the following sections:
  • Care Teams
  • About Me
  • Diagnoses
  • Next Steps
  • Health Log
  • Medications
  • Reactions
  • History
  • Advanced Directives

I'd add one more section, personally, about family, friends, relatives, etc.

Here's the link: https://www.sharedcareplan.org/Home/Guest.asp

You now know how important it is to document all the information about YOU. Now you can share it with others. Once documented, all you have to do is update the information, as it changes. In this way, you do not have to rely on memory.

INFORMATION TO GIVE TO OTHERS ON HOW TO TREAT YOU (the person with the disability) as a PERSON, NOT AN ILLNESS

Again, the following information has been gleaned from a variety of sources.

The way a person refers to persons with disabilities shapes his/her beliefs and ideas about that person. Using appropriate terms can foster positive attitudes about persons with disabilities. One of the major improvements in communicating with and about people with disabilities is "people-first" language. People-first language emphasizes the person, not the disability. By placing the person first, the disability is no longer the primary, defining characteristic of an individual but one of several aspects of the whole person.


For example, it is preferred to say, "people with disabilities" instead of "the disabled"; or "Mary has a vision impairment" , or, "Mary is vision-impaired" instead of labeling the person by saying, "Mary is blind."


An exception to this rule is for people who are deaf or hard of hearing. In general, the deaf community does not like to be referred to as having hearing impairments. It prefers deaf or hard of hearing. Use "hard of hearing" to refer to people who have hearing loss but communicate in spoken language. "People with hearing loss" is also considered acceptable. Many people who are deaf and communicate with sign language consider themselves to be members of a cultural and linguistic minority. They refer to themselves as Deaf with a capital "D" and may be offended by the term "hearing impaired." Many Deaf do not believe the condition to be an impairment.

If someone has diabetes, they are a person first, with diabetes. Please do not refer to them as "the Diabetic", unless this is how they wish to be refered to (and you know this because you have asked them ahead of time). I, for example, am a vibrant, wordy person who loves to read and work with people, who happens to have Multiple Sclerosis. It is a condition that I have; it does not define me.


If you don’t know the appropriate words to use, simply ask the person what is preferred.

Lastly, let's talk about "relationships" in general. If you are dealing with a disability, and/or with managing a chronic illness, it is CRITICAL that you NOT cut yourself off from others. Life is very precious, and, as we discussed in the quality of life blog, living well is and should be, the goal of us all.

If you have any additional questions about communications or disability relationships, please comment and we'll tap into our collective wisdom!

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