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What do PWDs think about BIID?

In putting myself out there so publicly as someone with BIID, I have become aware of a huge variety of opinions that people have about the condition. As bizarre as BIID itself might seem, many of these opinions may be argued to be even more bizarre. One such is commonly expressed thusly: “Everybody who has a real disability would feel insulted and disrespected by those who have BIID”. This is wrong on so many levels that it is hard to know where to start in reply. However, the purpose of this post is to focus on just one aspect: “What do PWDs REALLY think?”

This is posed here as a serious question; an invitation to PWDs to give their thoughts and engage in discussion. But I’ll start things off with my own observations on the matter.

Firstly, one might ask exactly who is making the assertion that PWDs are insulted and disrespected. One may reasonably assume it to be PWDs making the assertion. However, this turns out most usually NOT to be the case. I tend to engage pretty much anyone in discussion about BIID regardless of their stated opinion, excepting only those whose linguistic palette is limited to vulgarities. So I like to ask people how they have formed their opinions, in as non-confrontational way as I can muster, in order better to understand. In the case of this particular assertion under discussion, I have been motivated to ask “Have you actually had someone with a disability express their feelings about BIID to you?” It turns out that many such people do not have ANY friends or family with disabilities! Why so many ABs are scared to have friends with disabilities is an interesting question for another time, but the point is to be aware of firmly held assertions that are actually coming from a place of profound ignorance. Bear in mind however that such assertions are not automatically refuted just because they are made by someone who is clueless. The question remains as to what PWDs actually think.

It may seem obvious here, but I’ll just state that PWDs DO think for themselves and are not in need of some condescending AB telling them what they are supposed to think. And I’ll state, equally obviously, that PWDs are different from each other and therefore have different thoughts. Supposing them all to think the same way is just as condescending. Be careful what you think you know about someone based on their apparent circumstance. A common “argument” I hear is “Anybody with paraplegia would give anything to walk again.” Rubbish! Such blanket statements are always suspicious. One of my new friends, who became accidentally paraplegic at age 10, told me it was the best thing that ever happened to him.

In the two years since becoming completely open about BIID, I have received hundreds of private messages from PWDs offering their opinions. With such a large sample size it is tempting to do statistics and present the results as a scientific survey. However, such an approach is fundamentally flawed due to self-selection bias. How is one to determine the relationship between someone’s opinion and their motivation for writing to me? Consequently I shall present my observations as being nothing more than anecdotal, albeit based on hundreds of one on one conversations.

My first observation is that two thirds of strangers with disabilities who write to me in connection with BIID are quite positive from the outset. By this I mean they are immediately accepting and understanding; they make overtures of friendship and quickly become emotionally supportive.

One third of the sample respond initially with negativity. I try to engage almost all of these in serious dialog about the subject. Of those who are willing to engage in dialog, I am able to facilitate a change to a positive outlook regarding BIID in 75% to 80% of them. This high percentage surprises me, as does the rapidity with which it usually occurs. Am I that persuasive? Actually I don’t believe it is a matter of my logical faculties. One of my talents is to make myself disarmingly vulnerable to just about anybody. This allows people to drop their guard and I am not perceived as a hostile. They see ME. And then they have a motivation to understand; and that is all that is needed. Quite a few of those whose minds I have helped change become close and supportive friends. One might never have imagined this to be possible based on their first communications with me. It helps a LOT to refrain from lashing back at someone who seems angry at you. It is much more effective for them to come to a place of offering apologies on their own accord. NEVER demand an apology!

Do not interpret what I say as implying that no PWDs feel insulted or disrespected by those with BIID. Some DO express this; just not a majority in my own experience. The next question is WHY do they feel this way? I have my observations here too, based on many conversations.

When I look at pictures of hundreds of PWDs who have been supportive of my BIID, I see something in common. I see happy smiling faces. I see people who are accepting of their own disabilities, people who are loved and are able to love, people who are not constantly angry. This in no way implies that they are immune from bad days, depression and suicidality. I am very responsive to this. It is both an obligation and a joy to be emotionally supportive of those who support me.

As for those who are negative, try to remember that most are NOT truly angry about BIID and they are NOT truly angry at you. Approach them with compassion and try to understand where they are at. They may be angry about being disabled. They may be angry that their life is not what they hoped it would be. They may be angry at the way PWDs are treated. Some PWDs take only weeks of being consumed by this phase; others take decades. It can come and go. Try to empathise. Feel what they feel. Acknowledge and validate what they feel. You CAN help (some of) them. By helping them you help everyone with BIID, because their own self acceptance is linked to their acceptance of those with BIID.

This is just one person’s experience of what PWDs think about BIID. I hope to hear a lot more of what others think, from their various perspectives.

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