When she was 14 months old, activist and advocate Freyja Christian was diagnosed with pontocerebellar hypoplasia, a very rare, poorly understood, and ultimately terminal neurological disorder. She is now 9. The following are Freyja’s words, as told to her mother, Aimee Christian.
I can’t lie. You are more mainstream than I’d like. You were not my first choice. But you are a smart man who loves his kids and his country. When my mom showed us the video of you hugging and kissing the forehead of a young man with Down Syndrome, and then thanking him for the hug, I got teary because you spoke to him with respect. When I saw you struggle with your stutter but keep talking during the debate, I knew that hug was real. We read that you were nice to a kid with a stutter and showed him how you still mark up your speeches even though you are a grownup. All of these things make me want you to be in charge of our country, even if my family and I don’t agree with every single one of your views. My parents say it’s OK to disagree thoughtfully and respectfully when I am being treated with equal thoughtfulness and respect. As a disabled person I have to fight to be treated with equal thoughtfulness and respect, so I know that doesn’t automatically happen.
My parents support me unconditionally, and I have loving friends and family, but during the Trump administration I began to feel like my country and its leaders didn’t even see me. When you are the president, I hope you will be better.
I don’t know if I’ll grow up, but I still worry about the future.
I don’t know if I’ll grow up, but I still worry about the future. I am scared that our planet is too damaged to fix. You believe that people cause climate change. My mom says you want to re-enter the Paris Agreement which is an agreement between countries to do less damage to the Earth. You say you would do this on your first day in office. I’m glad to hear it because the environment can’t wait another minute.
Because I am disabled and receive special education services in public school, I worry that the kinds of help I rely on — Medicaid, small classes at my school, the ADA and IDEA — are all at risk. You say there should be full federal funding of special education in [public] schools, so kids like me can keep going to the same school as typical kids like my sister, Thora. This benefits not just students with disabilities but all children, because then we learn to get along with people who are different and be patient with them. It makes me happy that you want to increase funding for low-income students and hire more special education teachers. My sister and I love the school we go to, but I’d love it even more knowing that all children could attend a school as wonderful as ours.
I am medically complex, so I go to a lot of doctors. My parents have [private] insurance, and I have my state’s Medicaid waiver for more insurance, but I need both of them to afford my medical care. I want to know that other disabled and chronically ill people can have the same medical care as me. I want my parents not to have to pay any more money for insurance. I think even healthy, able-bodied, neurotypical people should be able to afford to go to the doctor when they need to. Healthcare costs a lot.
Joe Biden, I need to know that the leader of this nation is good to women. My parents teach me that it’s my body, my rules, but the people in power now don’t see it that way. I hope you will.
Don’t promise things you can’t give us. Get us back to at least what we had before. Be fair. Be respectful. That’s all you need to do.
My family is queer, and it mattered to me when I read that you told a trans person that trans rights are human rights and you told a trans kid’s mom that you would reverse the anti-trans policies of the Trump Administration. Did you know that transgender women of color are killed or hurt a lot a lot? That is terrible.
I think you need to work harder and use better words to show Black people that you care, but I am glad that you support Black Lives Matter like I do. I’m glad that you chose a Black woman as your Vice President. I like that Senator Harris speaks up. My mom says that’s the only way to be heard. I also like that you and Senator Harris tell the truth about COVID. That shows you think my health is important, too.
When you become president, you are going to have a lot of work to do just to undo the damage of the last four years. So get busy. Don’t waste our time. You have to fix Trump’s mistakes, and you have to leave the United States in better shape than you found it. We cannot let this happen again.
Don’t promise things you can’t give us. Get us back to at least what we had before. Be fair. Be respectful. That’s all you need to do. Good luck!
This as-told-to has been condensed and edited.