Although we have different abilities and disabilities, it’s always nice to visit with people who are comfortable with these and can talk and laugh about them in a way many people can’t. I am surrounded by special people in my life that can do this and I feel comfortable talking about these issues with them, along with all of the other things going on in my life and theirs.
Almost a month ago, in a discussion on our chat site, I referenced being an athletic person before I became disabled. With the disease that has changed my life, I have to be on many medications, including extremely high doses of Prednisone (an oral steroid) and Solumedrol (another steroid administered by infusion). These have caused a weight gain of over 50 pounds. My doctor is encouraging by letting me know that if I can decrease these in the future, I’ll be able to drop some of this weight. I miss those days and was sharing that.
One of the volunteers emailed me privately and stated that she had not asked me about my life before I became disabled, and what my disabilities and disease are, even though she was interested, as she didn’t think this would be respectful. I immediately emailed my response to her, stating I didn’t mind her asking me at all and told her my history.
That caused me to think about my comfort level talking about aspects of my disease and disabilities with others that are not in my closest circle of friends and family. When I speak at a Summit event, I invite and welcome questions about these issues. Although people may be cautious because they aren’t sure how to word the questions “correctly,” I know that their intentions are good and I answer them, possibly even providing language that they can use in the future that is better, if they want that. In these roles, I am educating others about my life and how Summit has changed it. My journey to Summit’s door is what I am there to share.
I believe I am educating people when I’m in public with Hayden. When children want to pet him, I frequently ask them if they know what a working dog is. I take this opportunity to discuss the topic with them. This also takes place with adults, who may not be familiar with assistance dogs, besides guide dogs they have seen or heard about. For me, if someone is interested in Hayden and would just like to pet him, or if they are interested in how he assists me, I love the chance to tell how he has changed my life.
I appreciate people asking first, and usually will say yes. If I say no, it’s not personal. In these circumstances, chances are that I’m not feeling well, I’m in pain, I’m in a hurry, Hayden’s having a hard time focusing or is tired, or any number of things that could be going on.
I know that because I live with a disability, I have made assumptions that I can talk with others about theirs, at times even asking strangers. Many times when I see another person partnered with an assistance dog, I do initiate a conversation with them about their experiences with their dog, and I share my own. I wonder if they feel intruded upon, or that I am assuming a kinship that isn’t there. Just because I share a similarity, does not mean that I have a relationship with that person?
I realized that this may be as intrusive as when people walk up to me, seeing my cane, or Hayden and ask what is “wrong” with me. To me, this is very rude and implies an attitude of “better than” on their part, as if they are “normal” and I’m not. I am living with a disability that doesn’t preclude me from being a human being with many strengths and wonderful attributes. I don’t believe people have the right to ask about my personal self, just because they see an indication that I need physical assistance, just as I wouldn’t randomly walk up to them in a store and ask them what diseases or conditions they may be living with.
When I have more of a relationship with someone, such as the relationship that is there automatically between the volunteers, clients and staff at Summit, I feel entirely comfortable talking about these issues, because I know all of you relate to me as a human first, not by identifying me as my disease and disabilities.
I don’t know why I felt compelled to write my thoughts down. I want people to understand these are my feelings only; I’m not trying to represent anyone else. I just think there’s a fine line between learning from each other and being intrusive. It’s not always easy for any of us to navigate as we make contact with people who are different than ourselves and we usually err on the side of being proper and not talking about these differences. We miss out on learning so much from each other because of this. It helps me to know that all of you see my humanity first, which allows us to share about our challenges, successes and goals.
Michelle
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