Charlotte Hyde: The pros and cons of self-advocacy

A couple of months ago, I gave a talk at the University of Reading Disability and Neurodiversity Research Showcase. In my talk, I discussed the barriers I faced at university and how I dealt with them. One of the tools I mentioned was self-advocacy. 

I find it useful to split approaches to self-advocacy into three categories: 

Open – people that are happy to talk about their deafness/disability and access. 

Anxious – people who are not comfortable discussing their deafness/disability and access. 

Unaware – people who do not know they are deaf/disabled.

I have been a member of all three of these categories. I was born deaf, but I was not diagnosed until I was twelve. I spent the first twelve years of my life thinking I was hearing everything normally. Looking back, I was not. I would have hugely benefitted from accessibility measures and adjustments in school. 

Post-diagnosis, I was anxious about talking about my ‘hearing loss’. I let other people advocate for me. I was clueless about adjustments and how to describe the way I hear. It had been the same for my entire life, so how was I to know any different? Thankfully, I had a wonderful Teacher of the Deaf who knew exactly what I needed and who was able to put this in place for me. 

Finally, at Sixth Form and beyond, I became open. As I gained more knowledge about the deaf community, it became easier to describe my experiences.

There is something about knowing that thousands of other people have similar experiences to you that enables you to do something you previously thought impossible.

There was also a burgeoning sense of responsibility. I knew that my words could potentially impact another deaf person in the future. I had to be careful to explain that other deaf people may have different needs and that I am by no means an expert. 

Self-advocacy has its perks. I have control over the way my accessibility needs are communicated. I can articulate exactly what I need. I can set people up – train them if you will – to be able to communicate with me. This can take place over many conversations, or just one. I can change my script to suit the situation and be on hand to answer any questions. 

However, this constant self-advocacy can lead to burnout. I can begin to feel anxious again about telling people I am deaf or asking someone to communicate with me in a different way. I end up forgetting parts of my usual script, leading to further mop-up conversations in the future. 

Personally, one of my worst fears is that hearing people think I am annoying for talking too much about being deaf. I am worried that they think I am going on about it too much – that they already know, they do not need reminding and that I need to find something else to talk about.

This makes self-advocacy far more difficult, as I often find that hearing people do need to be reminded. They start out well but soon forget that I need to see their lips. They speak clearly for the first few sentences, then taper off into a mumble. It is a perpetual internal battle between “am I making too big a deal of this?” and “I deserve access”. 

I am not ashamed of being deaf. Far from it – I am proud of it. I recognise that it takes a lot of bravery to constantly advocate for myself. There is always an underlying fear that someone will react badly, or not accommodate me at all. 

The admin required while advocating for yourself is also like a part time job. It took me two years to get a Roger Pen on the DSA while I was at university. I remember being on holiday and having to send emails while visiting various attractions. I did not have a day off from worrying about my Roger Pen until the day I received it. 

I call the anxiety, frustration, and burnout I experience the “dark side” of self-advocacy. I see self-advocacy as a useful tool, but ultimately something that is unsustainable in the long run. It works well for interpersonal relationships, but not as well in complicated systems like school and universities. 

Schools, universities, and workplaces can help relieve this burden for deaf and disabled people by being proactive, rather than reactive. Lecturers, teachers, and colleagues can take the time out to research accessibility themselves. They can also reach out and periodically check in. However, their approach needs to be flexible; not every deaf or disabled person has the same needs. Nor will they want the same level of contact. 

I am slowly learning to strike a balance between advocating for myself and delegating it. I am still working on the best way to communicate my needs. Honestly, I do not think I will ever reach a point where I can do it perfectly in every possible situation. I do know that I have learned a lot in the eleven years I have known about my deafness. Looking forward, I can only keep improving.