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Where is Hello, Little Lady?

Sadly,  there hasn’t been much content or discussion on Hello, Little Lady over the past 18 to 24 months.  Reactionary to particular events – personal, professional and family has meant that other parts of my life have had to take priority. There have been many moments over the past 18 months where I have felt like I had nothing meaningful to contribute to the ongoing conversation around Dwarfism. Below are the main reasons for the radio silence. Life ebbs and flows, to be metaphorical about it.  Thankfully, I have this space where I can pick it up and continue contributing my thoughts and ideas around the Dwarfism community and my artwork and creative activism.

The Pandemic

The first stumbling block was the pandemic.  It felt that overnight, the thing that defined the work I had been advocating for changed once we went into lockdown.  Suddenly, all those requests and pushing for online access to activities, events and work happened when the non-disabled world scrambled to keep connected during the pandemic.

I know I am not the only one in the disability community who was right royally peeved about this, especially after years of already embracing technology to work in ways that benefited our circumstances.  That said, it was amazing to qualify for funding opportunities for online work that wasn’t dictated by locality and could bring communities, like the Dwarfism one, to work together (the WayFinders Podcast project).

Once again, though, while there has been some fundamental change, or should I say, understanding of the benefits of online working, we seem to be finding ourselves wondering how long this change will be maintained.

Activism Burnout

Around the time I wrote the spoken word piece ‘Disability and the Politics of Visibility ‘ for Durham Book Festival 2021, I realised that I was suffering from burnout.   Burnout from constantly networking. Burnout from navigating (and not always successfully) this new world of arts that my activism found a home within.  The sentence “I’m tired of trading on my trauma to gain access to space and place” kept whirring around my head, and with the benefit of time, I can see that I needed some much-needed time to step back from this work that demands so much.

I also think I had become somewhat jaded too.  Dealing with the politics of relative success in an industry where opportunities are scarce, still asking for access, and beyond frustrated that conversations that still talked about access to arts and cultural spaces left me questioning, “what will gatekeepers actually let us do once we are in the room?”.

Type 1 Diabetes

In the same year, early 2021, our lives as a family were turned upside down, literally overnight.  Our darling, amazing daughter was diagnosed with the autoimmune disease, Type 1 Diabetes, during the lockdown of 2021.

In the space of 24 hours, we were being trained in how to keep our daughter alive as her pancreas was dying.  We were in shock for the first few months. Then comes the grief, coming to terms with daily injections, dealing with hypos and hypers, carb counting, and the emotional toll it takes on all the family looking after a child who now has a lifelong invisible disability.

At this point, I felt completely out of words about disability, dwarfism and advocacy. The reality hit that my child would face her own version of prejudice and ignorance. I cannot describe the grief and anger I felt that this had happened to my beautiful girl during this period. Devasted, I wondered, how will she manage when it becomes too much?  Thankfully, we all came through the grieving process, which was helped immensely when an unexpected opportunity came my way in our most challenging time as a family.

Part-Time Job

During this difficult time, I came across a wonderful organisation called Investing in Children. It runs a support project for children, young people, and their families living with Type 1 Diabetes, aptly named Type 1 Kidz.

They were delivering online sessions that we were able to join in with and gave us access and support to other families going through the same experiences as ourselves.

Within a few months, I was encouraged to apply for an Assistant Project Worker role which I gladly accepted. I was particularly impressed with how young people were involved in the interview process and very glad when I was offered the role.

This meant that my focus was very much on the Type 1 Diabetes community and finding my feet in my new role. My activism and work in the Dwarfism community took a back seat.

Through this position, I have been struck by the similarities faced in terms of prejudice, ignorance and the mental health impact of having a lifelong condition.

Questioning if my activism work was still needed…

Over the past 2 -3 years, I have been particularly aware that Dwarfism is being platformed in the mainstream.

There have been many positive role models for us to see. From Sinead Burkes’s meteoric rise, her Vogue cover, and subsequent children’s book. To Danielle Webb’s own children’s book and advocacy work, Cara Mailey’s inclusion on CBBC’s Dengineers, and Annabelle Davis in the Dumping Ground.  More recently, in Ellie Simmonds’s documentary – A World Without Dwarfism, as well as, Will Perry’s campaign to raise awareness of the negative attention received as a Dwarf person that featured on the BBC One Show earlier in 2022. I wondered if there was still a need for activism around our community’s inclusion.

While I am thrilled to see people from the Dwarfism community, quite rightly, being more visible – I have this niggling doubt about what happens next?  How can this visibility be embedded moving forward to ensure that the opportunities that have been given do not end up being tokenistic?

From my own perspective, while I’m pleased as punch that people with Achondroplasia are receiving much-needed recognition and inclusion – please can the mainstream gatekeepers (and dare I say it, the Achondroplasia community too) please take the time to ensure those of us with proportionate dwarfism are included in this platforming!

Like any community, we have a variety of intersectionalities and particular attributes, or to be more descript… voices that need to be seen and heard too.  I would love to see more representation of the different forms of Dwarfism in the mainstream, and not only in the inspirational porn magazine articles or voyeuristic documentaries.

Type 1 Diabetes Parental Burnout

The final reason for the radio silence has been one of the more immediately impacted on my health – physically and mentally.

Parental burnout from managing my daughter’s Type 1 Diabetes is a very real experience.  Type 1 Diabetes is a 24/7/365 condition where you must respond to managing your child’s condition at any time of day or night.  It is exhausting, and it all came to a head early in May when our daughter started her insulin pump.

The technology is amazing, no more 5 x day delivering injections, but it didn’t come without its teething troubles.  The morning after a particularly challenging day of trying to work, fit in a clinic appointment, pharmacy and prescription ordering and running up and down to the school for various diabetes-related issues, I awoke with vertigo caused by stress.

All I wanted to do was cry.  My body was telling me I needed to take things easier, and I went on the sick.

Work has been supportive, and I am starting to feel more like myself again, but burnout is very serious.   I cannot advocate enough about reaching out and getting support when needed!

What Next for Hello, Little Lady?

Nearly 2 years after all of the above, I am starting to find my way again.  Once again, I am starting to think about Hello, Little Lady and the direction of my art practice and activism.  I have a clearer head, and I can more articulate what I want to achieve. I’ve realised that it can’t all happen in one go and that not everyone will follow this journey. My voice and experiences add to the conversation.

I have been very fortunate to have had opportunities come up that I can’t wait to tell you about. I will be forever grateful to the people who continue to push and inspire me to keep doing this work.

My aim is to make sure more of our voices from the Dwarfism community are heard on our terms. That we are included in arts and cultural opportunities that reflect our lived experiences.

We desperately need institutional organisations to help facilitate, develop, and fund these opportunities. For support to provide pathways to develop leaders and creatives in the community, but also create a legacy that can help us heal our community’s past and develop a strong foundation of our lived experiences for the future.

Steph

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