Great to be back in the blogosphere.
Feelings are riding high these days. I might explode. There are so many things that I have to do to have the same opportunities as others, but then, each time the opportunity comes to fruition, it is the worst experience because I am not fully included. Having to endure this reality every time is exhausting. Happy to be included, but not when it is not my idea of real inclusion.
For me, there are some basic guidelines to full inclusion.
I have to have a communication partner that is competent. Writing is my sole way to communicate what I think and feel about how I am treated by others. What I experience is that when there is amazing support for me at the table, I stand a chance of being heard and really valued by everyone there. When that support is not in place, then I am seen as having nothing to contribute. Years of being ignored have been hard for me to get through and still impact me now. What I need is simple. I have to be able to access people who know how to strongly support me with my communication and regulation needs.
I have so much to say about really having the time I need to think through what is being discussed. Getting my thoughts together to answer an important question that I actually care about takes me a minute. I want to really emphasize that having time to prepare my thoughts ahead of time makes a world of difference. This means that if there is something important to discuss, I need the discussion points ahead of time.
Also, I need to have a lot of time to respond when I am in the middle of a live conversation. Learning to wait and not talk over me while I am responding is so difficult for so many people. Freedom of participation is taken for granted by so many. What I really want as a disabled person is a way to be invited to have a real voice.
What I think is the biggest and most frustrating problem is the lack of presumption of competence amongst people who should know better. Family members are often the worst culprits because they get worn out by my making so much trouble with my body. Then there are the professionals having to put their actions together with what they claim to know and think. It is too hard to process when there is still a huge gap between the two. Wanting to be seen as very competent is what steers me towards advocacy work, but it can be so disheartening.
What I hope to see are more seats at the table with an interest in actually having the support I need to be a full participant in the conversation. That is my hope for the future.
Graciela,
your posts are so helpful for me as the mom of a non-speaker. Thank you for sharing your thoughts and feelings!
Thanks for writing your blog. It’s been included in our blog post on Non-speaking Autistic bloggers.
I agree! So much!! Even for those of us who are partially or mostly verbal, but still have processing delays and rely on AAC in stressful situations, or when we’re tired, or… whatever, Tte problems you’ve brought up can still be a huge hurdle!
Nondisabled people, especially those without communication disorders are usually so wrapped up in how “easy” and “effortless” conversations, especially vocal conversations are for them, they have a really, really hard time understanding that it’s not that way for everyone! And even if they do understand it, it’s so easy for them to forget! It’s very frustrating for us!
Part of the problem is that society has made such an intrinsic link between language and intelligence, that even people who know better have a certain set of expectations that they find almost impossible to override or deconstruct. When, as a disabled person, you vary from those expectations, it can be extremely aggravating to be treated as if you’re “less than”, or somehow at fault for being different.