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The Hardest Part…..of being who we are

April 7, 2008

This post is for the Disability Blog Carnival, themed “The Hardest Part”

Since this is our first ever blog entry for the DBC, and we’re working under very limited time, it probably will not be as good as we want, but we’ll just have to live with that. We have a tendency towards self-criticism (hi Ivan…heh, he is the most critical of all of us)

Without further ado, here is our perspective of “The Hardest Part”

The hardest part of being who we are:

-Is having to keep many aspects of ourselves and our lives, hidden from our family. For instance, we don’t often describe in any real detail, effects of sensory overload on our overall ability to function, and how long those effects can last. We certainly don’t tell them how overload affects different each personality differently, as we don’t discuss our multiplicity with them in the first place.

-Is having to lie about not being too overwhelmed to do something or other at such and such a time, because if we tell the truth, we will lose certain aspects of our independence. Whether that would be for a short or long time, any length of time that we might lose aspects of independence that we’ve worked to gain for years, is unacceptable to us, if we believe such a loss to be unreasonable. We believe we have the ability to discern, most of the time, what is good for all of us, in terns of losing or being able to keep certain aspects of our independence. If we believe that it is necessary at any time to forego any aspects of our independence (ability to drive, going to college, living in our own place, etc) we do not see such a “loss” as a loss, but as a temporary, voluntary “giving over” of our independence, to be regained when the time is right. Sometimes that really “is” what has to happen, and there is nothing wrong with that. It does NOT signify weakness in a person or system of persons, rather it signifies STRENGTH, that one or ones are able to recognise……what’s best for them, blah blah blah. Trite as that sounds, we believe it to be true.

Note: being coerced into thinking that something or other is for the better of a person or persons, is absolutely NOT the same thing as the person or persons deciding the same for him/herself/selves. We cannot emphasise that enough.

The Hardest Part, continued:

-Is being unable to express ourselves in ways that work better for us at different times. Meaning, most people we communicate with wouldn’t have the patience for, or might find it odd, if we were to write everything out versus speak the words we want to say. Partially understandable, just because writing is a lot more time consuming than speaking because most people write more slowly than they speak. Unfortunately, we do not have a special typewriter that would enable us to type and press a button for a digital voice to speak the words for us. Athena in particular would benefit the most from such a tool, but we don’t have one, and she would have too much exposure anxiety to use it in front of other people.

We have tried writing stuff out for a therapist, but she wanted us to read it out to her. Kind of defeats the purpose, hm?

We’ve written detailed notes to our parents at various times, but one in particular sometimes manages to woefully misconstrue our words as meaning something entirely different than our original intent. Again, kind of defeats the purpose, hm? This time though, for a different reason. We write because it’s easier at the time, than it is to speak. Or, we can’t speak the words we want to say at all, the way we want them to come out, so we write. Then, if our words get misconstrued, we have to make additional efforts to correct the faulty assumptions.

The Hardest Part: Final words.

We apologise for the rambling, but we didn’t have time to preview this post before sending it off. We were away for a few days, and the deadline for submission is today, so we had to finish it and send it hastily.

We hope you have enjoyed reading our perspectives, and we look forward to participating in future Disability Blog Carnivals

Collaborative, Athena, The Integral, and Ivan

transcribed by The Integral

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