transabled.org

Another Post About BIID and Depression

by Sean - 18 January 2012

For a variety of reasons, I’ve been walking and standing a lot over the last several weeks. I won’t discuss those reasons here, but rather mention the impact that it is having on me. In short – it is exacerbating depression.

And Wisdom to Know the Difference

by Chloe - 21 October 2011

Rhayven and I have a few things in common, including BIID, intersexuality, and problems with selective mutism. Wait! What? Selective mutism? As with BIID, selective mutism (SM) is something many people have not heard of. As with BIID, even people who have heard of SM often do not have a realistic idea of what it is like. Consequently we have Selective Mutism Awareness Month, October, in which both Rhayven and I participated with videos describing our experience with SM.

The former name for SM, in the DSM-III, was Elective Mutism. The implication is that people with the disorder CHOOSE to speak or not, depending on the situation. That idea is absolutely as wrong and misguided as the assertion that people with BIID choose needing to have an impairment. Even in the DSM-IV, the phrase "refusal to speak" is used in referring to SM; still wrong! I try to explain in my video that people with SM are UNABLE to speak in certain situations; it is NOT a matter of choice. SM has a 90% comorbidity with social anxiety disorder, which is thus the most common underlying cause.

One of the SM videos I have seen refers to it as a disability. This seems much closer to the mark. Mutism disables one regardless of whether it is or is not selective. BIID is also a disablity regardless of whether one has the physical ability to walk (for example). So there you have it: inability to talk versus inability to walk. Well, let’s clarify that; SM is not a subcategory of BIID, despite there existing mutism manifestation of BIID. With SM you absolutely do NOT want to be mute.

The selective aspect though is another interesting comparison with BIID. Most people with SM can talk just fine at home but have difficulty with strangers. At the height of my SM, when I was 19, I was unable to talk with anybody at a grocery store or order my own food at a restaurant. Currently it would cause me extreme psychological distress to walk into a grocery store or restaurant without a wheelchair or leg braces; but I can walk at home. Used to be talking, now it’s walking.

At this point in writing I took a break to get a bunch of other stuff done. Before coming back here I checked the Selective Mutism Awareness site. The latest post was about how some people regard SM as being in order to get attention. OMG! How could people possibly be so stupid as to think such a thing? Attention is absolutely the very LAST thing someone with SM would want! But then some people think BIID is about getting attention too! It makes me wonder if people suppose attention to be other people’s motivations simply because THEY crave attention. People with SM crave NOT to get attention.

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

This is commonly known as the serenity prayer. It feels a bit weird for me to quote it since I am not a monotheist. However, it is great wisdom no matter what the source.

"Courage to change the things I can" has more relevance to my SM than to any other aspect of my life. Every person is courageous; you simply can’t get through life otherwise. Different people need different amounts of courage for different things. Having SM is indeed something that one can change, but it requires an immense amount of courage so to do. This is probably not obvious to someone who has not experienced it. When I watch the videos of people with SM I see some common themes. There is a belief that they can get through this, but there is also the recognition that it will be far from easy.

One of the people with SM listed their other psychological disorders in their video, and made the point that SM is the worst of all. This also reflects my experience; worse than BIID, worse than depression…

"The serenity to accept the things I cannot change": here is where my BIID is different from SM. Here is where I have found peace with BIID. Attempting to change something which cannot be changed will only lead one into more pain.

Elisabeth’s post "So What?" prompted me to think about writing this (with some prodding from Sean). She says "I know there is very little we can do about neurological disorders. One has to accept the limitation and work with it. One learns to manage the disorder by giving in. What I mean is that only when I accept it as it is, I can find the way to manage. I will understand how to work with it. Fighting it will get me nowhere." Right on, Elisabeth! There is that wisdom.

The big question is exactly how does one find that wisdom to know the difference? Why is it that most people with SM seem to know that they CAN get over it no matter how difficult, or even impossible, it might seem? Why do I have the impression that most people with BIID come to understand that it is just there, forever a part of them, to be lived with as best they can. The serenity prayer implies that the wisdom to know the difference can come as a gift from god, and I am not going to dispute that perspective even if it is not mine.

I can’t offer a rational explanation of where such wisdom comes from. Perhaps it is just that most of us have attempted to rid ourselves of BIID and failed. All I understand is that, by introspectively digging deep into one’s psyche, one just KNOWS these things…

Participating in peer support of any kind has its own reward. I’ll end with my favorite comment on the SM video I made: "Lovely video, made me cry.. it showed me i can and will get better one day :) x"

Discordant Identity

by Chloe - 9 October 2011

I identify as a mother, a wife, a wheelchair user, a friend, a scientist, someone with compassion, a lesbian, an inventor; or maybe just Chloe… We can self identify with as many or as few labels as we please. We can be many things all at once, and we can wear many hats. Usually this isn’t much of a problem. However, two of my ways of self identifying seem at great odds with each other, and it bugs me. It has to do with BIID.

Unconscious Condescension

by Chloe - 3 October 2011

I like to think of myself as someone who is not patronising or condescending towards people with disabilities. I really do see the person first. It takes no effort on my part. However, I recently came to the realisation that I had fallen into the trap of overestimating the significance of disability when it comes to my assumptions about attitudes towards BIID.

This is not Enough

by Chloe - 15 September 2011

Enough… It’s one of those weird words that looks stranger and stranger the more you look at it. It can’t possibly be spelled right. Is this a metaphor for the meaning behind the word?