Watching A World Without Dwarfism

The smallest of substitutions, no pun intended, made me a little person. Truly. One letter swapped in my genetic code, an A for a G, changed my life irrevocably before I got to live it. 

There were times growing up where I wondered what it would be like if I was a little bit taller. There were times where I wished I wasn’t different. Note I said that I wished I wasn’t different rather than saying I wished that I wasn’t disabled or a little person.

Being a little person in an average-height world has never been easy and, if I’m being completely honest, probably never will be. This world was not designed for people like me and refuses to adapt and change. Rather, it is instead trying to change me and people like me living with achondroplasia, the most common form of dwarfism. 

Before I go any further, I want to say that I am not, at any point, claiming to be an expert on this topic. I still have much to learn. The purpose of this post is to explain the issue as I understand it along with my own thoughts and feelings. I am always open to learning more and hearing differing opinions.   

To fully grasp what Voxzogo does, it is important to first understand what achondroplasia is on the genetic level. Please keep in mind that my knowledge of genetics is limited to what I learned in biology and from my geneticist. Achondroplasia is caused by a mutation on the FGFR3 gene, the gene responsible for the development and maintenance of bone and brain tissue. It is believed that the mutation causes the protein to be overactive and interfere with skeletal development. 

Voxzogo will bind to a specific receptor on the gene that reduces the growth regulation’s gene activity, stimulating bone growth. Participants who have received Voxzogo have grown an average of 1.57 centimeters taller (0.62 inches).

To understand what this drug does and the impact it has on the dwarf body and dwarf community, Paralympians swimmer Ellie Simmonds did her own investigation which was documented in the BBC film A World Without Dwarfism. She interviews children who are participating in the clinical trials, their parents, doctors, and opponents of the drug to get their perspective in order to shape her own opinion. I won’t tell you the conclusions she came to because I don’t want to speak for her and I want you to watch the documentary and hear for yourself.

Watching it, I had a hard time separating my thoughts and feelings about the film from my personal beliefs about the drug. Listening to one of the doctors who ran the clinical trials in the UK, I was getting frustrated. They (the drug company) are trying to claim this drug eradicates the complications associated with dwarfism rather than dwarfism itself and a part of me doesn’t believe it. A part of me thinks if that was their true intent, they wouldn’t be focusing on developing a drug that helps me grow.

I also found it interesting that all the parents who had elected to have their child participate in the trial were all average-height. I don’t know if this was on purpose but it does raise an interesting question:

Why is an average-height parent making this decision for their child who is not old enough to know what it means to be a little person, when they themselves don’t understand what it means to be a little person?

There was one scene in the movie that truly angered me. Ellie went to a fundraiser for dwarfism research where she was one of only two, maybe three little people in the room. This angered me because I have been in that situation many times before- the only little person or disabled person in a room of people who are trying to speak for me, who think that to fix my problems is to fix my body when in actuality my problems are societal and environmental.

If you want to be a true ally to the disabled community, then you first have to LISTEN to the disabled community.

They know best about what it is like to live in their bodies and know what they need in order to make their world more accessible.

I will never shame a parent for trying to do what is best for their child. Being the child of two average-heigh parents I understand that with dwarfism there are always some unknowns. I’m 27 and in some ways I am still trying to figure out what it means to be a little person. But, after watching this movie, one thing I know for certain is that dwarfism is not a disease that needs to be cured.

Dwarfism is not a societal problem. Ableism is a societal problem. 

I want to end this post by first encouraging you, whether you are a little person, disabled, or an ally to those communities, to watch this documentary. Then, I want to ask you a question posed in the film:

“If society was accepting of dwarfism, would parents choose this drug? Would this drug exist?”

Watch: Ellie Simmonds: A World Without Dwarfism - BBC Documentary