My Right to a Cure: Reflections on RJK Jr's Speech

4/17/2025 4 Comments

My Right to a Cure: Reflections on RJK Jr's Speech

Yesterday Robert Kennedy JR made what I believe is an historic speech. He showed that the latest figures are one in thirty-one children are autistic. One in twenty boys. There are no words that can convey the tragedy that has happened in this country. While the numbers worsened decade after decade, no one did anything to stop it.

I am one in twenty. My male friends here at Mouth to Hand are one in twenty. You cannot understand the suffering autism can cause if you don’t live with it every day. We suffer not only because we can’t speak, but because we have such severe comorbidities that too often go untreated because everything is attributed to autism. We hurt ourselves and people we love, and we can’t help it. We destroy property and we destroy our families’ lives, and we can’t help it.

I won’t even get into the emotional toll on us and our families.

And while we suffer, and while our families desperately try to find help, what have we been given by our country? - the label of bigots, because we want a cure. No, autism is not a beautiful thing, and no, my parents and I are not bigots because we want this nightmare to end.

If you don’t want the cure, don’t take the pill. But don’t stop me from swallowing it. The Robert Kennedy speech made me finally feel seen and heard. Maybe now there is a chance for help to come to those of us who want it.

4 Comments

Annika Cioffi

4/17/2025 04:53:31 pm

Tears sprang to my eyes just now. Spot on you are. Thank you for your EXPERT words. I will share them now.

Cathy Bryson

4/17/2025 09:04:07 pm

Thank you for your voice and your honesty so that we can better understand your lives experience. I honor your words.

Tom Gilbert link

4/18/2025 06:35:22 pm

A poem I wrote years ago:

Autism poem

Autism (oughtism, as opposed to noughtism)

Father says, “I can put on my socks  and my shoes  and I can lace them  and tie them. Can you?”
Child thinks, Wednesday  smells like cinnamon. The rain is a pink  red sound and  makes the swirlies  in the air  spin backwards,  but slowly.
Nature says, “The oak trees  make big acorns  for the squirrels,  and sing when the squirrels  scamper to get them.” The maple trees also add, “We make syrup for pancakes,  why don’t you?”
Mother says, “It is time  to empty  the dishwasher. The plates and the cups
Go up here. The spatulas  and the ladles  go there, and  the spoons,  knives, and forks  go in this drawer  in these compartments.  Can you  help me  do this task?”
Child thinks,  But why is  the number ‘15’ orange?  And the number ‘4’ red  and the number ‘7’  a shimmering green?
Nature says, “Pond sits still  all day  for the fish  and the ducks  and the frogs  and asks, ‘Can you do that?’ River flows always  on and on  for the boats  and the fish  and the land-cleaning  and the land-feeding  and asks, ‘Can you do that?’ Rain jumps  from the clouds  all the way  to the ground  for the crops  and the plants  and the trees  and asks, ‘Can you do that?’ ”
Teacher says, “Now children,  please take off  your coats and hang  them up, then  slowly and quietly  walk to your desks, and let’s get ready  for morning routine.”
Child thinks,  It’s as if the taste  of water  is more like  the number ‘10’  than the number ‘1’,  because  the number ‘1’ is  really white,  and the number ‘10’  is almost clear.
Nature says, “ ‘Ought is a zero. which is black  and is nothing,  but ‘ought’ is also  a circle, which is  everything and sky blue,  or maybe  it is both  nothing and everything,  or maybe neither  nothing and everything. But it’s also  love and kisses and love and kisses…”
Father says, “It is time to go  outside and rake  all the leaves and  put them all in even piles  and spread the blankets out  to put the leaves in  and then carry them  out back  to compost them  by the garden.  Here we go.”
Child thinks  When I look up,  through the morning hours,  to lunch time,  I’m not sure I can  get there from breakfast, but when I’m at lunch,  dinner seems  not so high  or so low, but just way over  there somewhere  in the distance;  but at suppertime,  looking back at the  chasm of the day,  it wasn’t so bad  a lengthy trip,  but then again,  tomorrow morning looks  like both the end  and the beginning  of the ride, which we do  again and again and again.  But there’s this weird tunnel we have to go  through to get  back to morning.
Nature silently  teaches silence  through all the senses  that sense  what she’s doing.
Mother says, “It’s time  to go  grocery shopping.”
Child thinks,  Get-your-coat- get-your-shoes- get-your-hat. But  grocery store is  28 symphonies  all playing at once, and  grocery store smells  too, too much  for one place,  and florescent lights  make continual  jack hammer noise,  and car ride  tastes like soap,  and wind is a dark green,  and song on the radio  looks like stale popcorn  and smells like toothpaste,  but car seat  feels like a prayer.
Mother asks, “Would you rather  we go to McDonalds?”
Child thinks,  It’s not Tuesday.  We can’t  do that today.

J jung

4/19/2025 07:35:27 pm

I love your poem! So evocative!

MOUTH TO HAND LEARNING CENTER, INC.

Hours

M-F: 10 - 6

Telephone

914 241 2500

Email

[email protected]

Address

41 S. Moger Avenue
Mount Kisco, NY 10549

YOUR CART

THE POET IN ME