Looking Forward

Rose: My question is what is your heart and mind thinking about your future? Very much want to know how you see your futures. 

Joe: My mind says one thing and my heart says another. Really happy to keep learning always. My mind worries so much that I will end up somewhere that is not open to my intelligence. 

Chad: Got to say that I am excited about the future. I understand this fear Joe but I think spelling will only get more accepted and respected. 

Jack: I am also excited about our futures. People like Elizabeth Bonker inspire me. They really show what we can accomplish. 

Elizabeth Bonker, nonspeaker and the 2022 valedictorian of Rollins College, delivers her commencement address

Sam: I agree. I think opportunities for spellers are growing. I think our futures hold more beauty than really ever before. 

Maudey: All my thoughts about the future are up in the air. Learning to live in the moment. 

Matthew: I am more hopeful about my future every day. I am new to spelling and since I started my outlook has changed. Having a way to show my family my true self and being seen by them has improved all dreams for the future. 

Rose: I love the way you guys think about it as our futures. Very much agree about spelling being more respected in more circles. Still have a long road to go. I think it gets brighter ahead for us. 

Christopher: So happy to answer this. Feeling like the future is rosy, Rosie! Haven’t you seen spellers all over the world who are making an impact? On my mind is even our Maudey participating in panels and making her voice heard. I get so inspired thinking about how I get to live in this moment for non speakers. Old systems are breaking down and we get to remake them in a way that respects autistic people and our minds.

Maudey participates in a panel at the AOTA Inspire 2024 Conference and Expo entitled "Experiences of Using Assisted Communication Among Individuals with Complex Communication Needs' [click here for full video]

Maudey:  I am so honored that you used me as an example, Chris. I love making my voice heard. I agree this is a vital moment for non speakers. I feel a real sense of opportunity. 

Rose: This is such a great way to think about it, Christopher. There is no strict formula for our futures. This moment speaks to us and invites us to create the life we want. This is our life and we make it what we want. That is a beautiful thought.

Joe: I agree yet I have to say that this moment has the opportunity for both hope and fear. Yes the future looks bright but only if we fight for it. 

What feels so important about this moment?

Joe: This moment is important because spelling is getting recognized. More people are making waves about it. Yet others push back and don’t believe it is real. They think because my communication partner holds my board the words I spell on that board are not mine. My partner does not change my words. They make me feel regulated enough to get the words out. My partner has to be someone who can make my body feel regulated enough to cooperate with my brain. 

Rose: There are lots who think this is not real. There are lots who think we are disabled cognitively. That is pure fiction. This is a physical and specifically motor disability. This means I do not have my body cooperating with my brain. This means I have trouble with things others find easy. This includes talking. Not sure if all understand how much more difficult it is to control all the muscles needed for speech than it is to poke out letters on a letterboard. There are way fewer muscles involved and less complex systems. 

Joe: That is perfectly said. There are many parts of autism. Rosie is talking about apraxia. The disconnect between brain and body. That is my big challenge. There are also auditory processing and emotional dysregulation issues that are at play but not cognitive impairment. You see plenty of autistic people blend into NT [neurotypical] society. It is not the autism that makes up appear more physically disabled. It is the apraxia. 

Sam: There are all different pieces to autism like Joe said. What spellers in here all share is apraxia. 

Chad: I always think if apraxia was not part of me I would not look disabled. 2025 is the year to educate the world about apraxia. 

Maudey: Right on, Chad. I agree that many autistic people are able to pass as NT. Apraxia is the visible part of the disability. I sometimes call it body betrayal because it feels like my body is rebelling against my brain. 

Joe: I always think my life would be so different without apraxia. Autism makes me who I am but apraxia holds me back. 

Christopher: Whenever I list the things I love about me my autistic brain is at the top. Having apraxia is the thing I love least. I need help getting my body to do what I want and need. Doubters think these can not possibly be my words from my brain. Are people so afraid of being wrong about autism that they would try to silence so many spellers all over the world? [My communication partner] supports me while I write this. She doesn’t write it for me. She can’t she is not as funny as me. Sorry Megan. 

Alex D: A feeling of a spark catching is how I would describe this moment. 

Rose: That was beautiful Alex. That is how it feels now that more people are learning about about spelling yes.

Maudey: I understand all that you guys are saying about this being an important moment but this fight has taken years to get to this moment. 

Jack: Good point, Maudey. Joe, it is an important moment but only if real change comes. We can help make that change by getting our words to feel heard. Light up the world with our words. 

Christopher: I think we can go into this moment with hope even though there is also fear. The fear of a setback is real, yes, but I think we need to look towards the places where we are breaking through and keep going. 

Alex D: Got a chill hearing how you are all so inspiring. Always seeing so much light. Agree we have a fight ahead. Always love hearing so much support from you guys. I agree with Christopher that so much hope should be felt. 

Jack: I feel there is more reason for hope than fear. My feeling comes from being open to the idea that real change is possible. 

Joe: So happy we are writing about this. I always feel at peace when I feel your optimism. Having real community like this is so important.