Labels are a necessary evil.
The first step to finding a solution is understanding what question you are attempting to answer.
In The Hitchhiker's Guide to the Galaxy a society got so fed up with life that they created a supercomputer whose sole purpose was coming up with "the answer to the ultimate question of life, the universe and everything." The computer took seven and a half million years to come up with the solution. Take a couple of minutes to watch the scene unfold.
The answer to the question was 42. What kind of answer is that? As the computer states "Only when you know the question will you know what the answer means."
Receiving a diagnosis and being labeled can be just as frustrating as being told that the answer to everything is the number 42. Often it is frustrating and for some people even traumatic. If you have found yourself in this situation then you can relate to suddenly becoming "one of those people".
Many people will refuse to accept the diagnosis as being true. They simply cannot deal with the stigma associated with how they personally view the diagnosis, or more likely how they feel the world perceives the categorization.
A diagnosis is not a scarlet letter. It is not meant to ostracize or alienate the individual. It is meant to supply a variety of questions that can now be answered. Once the individual knows what questions to ask then they can prepare themselves to receive the answer.
As a person who has lived my entire life with a learning disability I understand and can relate to the frustration of this experience. I have had to fight for myself on many occasions on how to deal with my labels. I have asked myself if they are useful, if they define me, and whether they can be defied. I understand the corresponding strain and exhaustion that comes with this endeavor.
I also can relate to the stigma many parents and individuals experience when they are first diagnosed with a disability or when they have to reach out and ask for the assistance from another. I have struggled over the years with how I relate to this information and how useful it is to share with others. Even though this battle can be hard, it is important that it occur.
It is only after a person deals with the stigma of their label that they can gain the benefits of receiving a diagnosis.
I want to share with you a few things I have learned as I went through this process.
While I was in law school I experienced an huge amount of stress that was centered on the stigma associated with having a learning disability. When I reached out to my school they did not respond to me in a helpful manner. This was completely different than any prior experience I had went through with other institutions of education.
This experience made me deeply analyze what it means to have a disability.
My existential exercise helped me create a simple mantra.
In order to understand the nature of a disability you must first understand that there is no such thing as a disability.
This has become a profound mantra in my life and one I share with others as often as possible.
What I mean by it is that the being labeled as someone who has a disability does not change who you are. A disability is simply a helpful social categorization of individuals who have experienced life on a different but similar path. No two people experience their disability in the same way.
Assigning a label to this shared experience is primarily helpful because it allows these individuals to learn from their common experiences and struggles. This is important because for people with disabilities their life experience will be different than that of others. It is simply a factual observation and does not express anything about whether the different experience is good or bad.
If you have a struggle with stigma, like I did, I would like to challenge you to actively strive to alter your perception.
Choosing to not learn from the experiences of others will put you and/or your child at a needless disadvantage. Furthermore, it perpetuates the problems that you most likely fear.
The best thing that happened to me was coming to terms with this stigma. Doing so has allowed me to add my voice to the shared experiences of others. It has strengthened my confidence and allowed me to discover that my experiences and strategies are truly unique.
Dealing with this stigma allowed me begin asking the ultimate questions and more importantly find the answers. When I first received my diagnosis it was about as helpful as being told that the answer to my life was 42. It allowed me to receive some accommodations in school but that was about all. Coming to terms with my label allowed me to learn from it. Suddenly I was offered a road map of the obscure nooks and crannies of my mind. I had discovered that even though I am unique- I also have a lot in common with others who share my label.
Please join me on this path towards being more open and honest with others about what is like to be in your shoes. By doing this you will become an incredible role model for your child. This will allow them to understand what environments are appropriate to share things in and which are not.