Month: June 2018
Open Letter to ASHA
It is so hard for me to live my life to the fullest each and every day because of my severe motor planning challenges. These mostly impact my speech, but also impact the way I use my body to interact with my environment. It is the most frustrating thing to not have total control over your body. Stephen Hawking’s body did not work well but his intelligence took him far. Why is it hard to believe that I am in the same situation but have been trapped in a broken body since I was little, and had not yet had the opportunity to show my intelligence to the world?
There are many individuals that use alternative ways to communicate their intelligence to the world. This is my only way I have to write letters like this to make my voice heard.
Have you ever had anyone question your intelligence or the words that come out of your mouth? I guess that it is not normal for you to experience this, but it is my norm. Using a letter board to make my voice heard is laborious and is hard work but it is my only option right now that works for me. Your proposed position statement on RPM is going to possibly take this away from me and from others in the same boat as me. It is hard to believe that these hard earned words that I spell are not seen as real because I need someone to hold the letter board and prompt my body to sustain through my thought. I wish I could spell independently and I am trying, but it takes my body so much time and rigorous practice to gain automaticity.
What is not okay is that there is not more opening of minds to the truth of the potential within me and others like me. This is going to be a significant loss to the field of mathematics if my means of communicating is taken away in an educational setting because of this proposed position statement.
It is about time that words that are painstakingly created from the minds of non speakers by pointing to letters one at a time are seen as valid and true. Each and every individual has the right to make his voice heard in this country, but your proposed position statement would possibly get in the way of enabling some to take advantage of this right.
I want to encourage the ad hoc committee that is in charge of this proposed position statement on RPM to reconsider and to issue an apology to those of us who are able to communicate now thanks to RPM.
Many non speaking individuals are not reaching their potential because of thinking that is not accurate. You have an opportunity to make this right and to stand up for the communication rights of many of the individuals served by the members of your organization.
Thank you for your time and consideration,
A non-speaking self advocate
If you are interested in reading ASHA’s proposed position statement on RPM, you can find it here: https://www.asha.org/peer-review/Proposed-ASHA-Position-Statement-Rapid-Prompting-Method/
If you are interested in reading other self-advocates thoughts on this topic please check out:
https://faithhopeloveautism.blogspot.com/2018/06/an-open-letter-to-asha.html
http://www.lauranadine.net/?p=3556
Learning to Show Affection
I was able to spend five days in the north Georgia mountains with my boyfriend, Jordyn. Seeing Jordyn for five days was interesting because we usually Skype or have short visits at conferences. This was a nice change.
We set a lot of goals for ourselves so that we could work on showing our commitment to each other, but it is not easy when our bodies cannot gain control of themselves. It is awesome to be in a relationship! However, it is frustrating to have no way to try to demonstrate your affection. With the help of Jordyn’s mom we got our bodies under control enough to hold hands. This was my favorite part of our time together.
When we watched movies we adjusted to sitting together. A lot of the time was awesomely spent hanging out with each other. Happiness does not have to be complicated. It is great to enjoy the presence of the one you love.
It is awesome to have the chance to have a first kiss too! This was more challenging to pull off but we had the wonderful support of our moms. It was incredible! It was certainly the best moment of my day!
Many beautiful moments were shared and my Jordyn made me see what an amazing guy he is. I think he is a keeper!