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Georgie Hulme addresses APPGAT members

Georgie Hulme addresses APPGAT members

18th December 2018

In its last parliamentary event of 2018, the APPG for Assistive Technology held its annual planning meeting, where members and associate member organisations discuss the progress of the group and opportunities for effective parliamentary engagement over the coming year.

The meeting began with a welcome address from APPGAT co-chair Seema Malhotra MP. We then heard from Georgie Hulme who spoke on her experience accessing assistive technology, and then from the group manager Robert McLaren who gave a presentation on the group’s achievements in 2018 and proposed plans for 2019. Finally,  APPGAT co-chair Lord Holmes, closed the meeting, thanking his fellow parliamentary officers, associate members of the group, and Policy Connect. With permission from Georgie Hulme, we here reproduce her insightful speech from that day.  

I personally can’t emphasise enough just how much assistive technology helps me in my everyday life

Hi, my name is Georgie Hulme and I was very encouraged to hear about the existence of this fairly newly formed cross-parliamentary group, as I personally can’t emphasise enough just how much assistive technology helps me in my everyday life. So I am very happy to be invited to share some of my experience with you all today.

I am neuro-divergent and have adult onset Tourettes Syndrome and like the majority of people who have Tourettes, I also have co-morbid conditions, which in my case are OCD and Irlen Syndrome. Whilst I use various types of assistive technology, I have decided to predominantly focus on the use of my speech device, due to time restrictions and as for me, being able to communicate is most important.

I have a degree in social policy and also qualified as a social worker and learning disability nurse. I worked in various health and social care settings for 18 years, mainly working with adults with learning disabilities, mental health conditions, autism spectrum disorder and Deaf British Sign Language users. So before this situation happened to me, I had some knowledge of assistive technology and various different ways of communicating, as well as the general complexity of accessing appropriate services and issues relating to funding, including which team, teams or service should take responsibility.

I have experienced speech blocking episodes for about seven years. This is a symptom of Tourettes that many people do not know about and it’s a type of tic. For me, episodes used to be frequent and last anything from between a few minutes to 2 days, but even when I could speak, often people found it hard to follow me due to my frequent vocal tics interrupting and also it was just physically difficult and often impossible to get any words out. However, this current speech blocking episode has so far lasted for three years and three months. Before this current episode, during such periods I hid away. I refused to see people and would cancel any plans because I couldn’t communicate. This resulted in self-neglect and totally knocked my confidence and self-esteem. I had little quality of life.

Since my symptoms started at age 23, they gradually worsened over time, with definite periods of waxing and waning. My tics have changed in presentation, intensity and frequency and will continue to do so. Some tics last a few minutes, or occur only once, and others last a few weeks, months or years as tics are completely unpredictable, there is no way of knowing if symptoms will stay the same, improve or worsen.

These episodes became so frustrating that I tried some communication apps, some free, some I paid for, but none were appropriate for my needs, which led to further frustration. At the time I first tried the apps I had repetitive arm tics that meant almost constantly hitting my thighs, so I often could not type or only very slowly. I tried apps with pictures and symbols, which for basic things like asking for food and drink was ok, but not to discuss anything complex, so I was still majorly restricted and it was also extremely difficult for people around me.

The right to communicate is a fundamental human right and yet not everyone has access, knowledge or appropriate tools for them to be able to do so

When this current long-term speech blocking episode started, I initially had great difficulty accessing services which were appropriate to me. My case of Tourettes is very atypical, so no one knew how to help and I did not meet many of the criteria needed to access particular services. An added difficulty with this was not knowing if it would continue to be a constant or an intermittent issue for me. I was referred by my GP to a Speech and Language Therapy Team as that was all they knew about. This wasn’t a positive experience for many reasons, as their focus was purely on ‘speaking’ and they didn’t have the skills to advise on equipment or any funding attached to their team.

We live in a society where vocalising language is viewed generally as superior to other forms of communication. This is similar in the medical world too. It’s generally assumed that everyone’s aim should be being able to speak and this results in limited or no access to other forms of communication for many people, as that becomes the main focus and devalues other types of communication. For example using pictures, symbols, gesture, sign language. This is because it is how the majority of people communicate. If I am honest, I would prefer to be able to talk voluntarily again, as that’s how I communicated for most of my life, but that does not mean I see it as superior to other forms. For me, it would be easier than using a text-to-speech device. As marvellous as this device is, it obviously has some limitations and difficulties, which is in many circumstances due to people having little knowledge or no experience of communicating with someone who uses assistive technology for communicating.

The right to communicate is a fundamental human right and yet not everyone has access, knowledge or appropriate tools for them to be able to. Or when they have, like myself, are often ignored, patronised or not given the time to communicate in a way that’s accessible to them. For me that is made more difficult due to my constant vocal tics and my symptoms often aren’t recognised as Tourettes, it’s assumed I am being abusive or I am unable to make my own choices about anything.

I ended up self-referring to Ace Centre, as a social worker informed me about their service. I didn’t at the time meet their criteria, but I often don’t meet service criteria as my needs are atypical. They were very helpful and it enabled me to try some different devices and software and then I purchased a case with an integrated speaker and software for a tablet I already had. This helped for a time, but because I also have violent tics where I punch, kick and throw things, and also tic attacks which are similar to seizures, this technology was smashed after a fairly short period.

I can communicate with old friends, and have experienced a boost in confidence

Then Ace assessed me and provided me with as sturdy a device as possible. This was much more suitable, the software much easier for me to use and the voice clearer. They also made me a strap to attach it to my wheelchair to reduce it being tic-thrown. This is the second device I have had from Ace and the fact that I have the reassurance that if one breaks due to tics, it will be repaired or replaced, reduced my stress levels massively.

What this speech device has done for me though in many situations, has enabled people who knew me before the tic onset, to know that I am still the same person, as they can hear my words. Also, for people who didn’t know me before, that there is more to me than my motor and vocal tics. This is dependent on people being patient and understanding, or over time, getting used to how I communicate. I’ve had to get used to it too. I do understand that it can be difficult to follow my speech device over my constant vocal tics, especially initially. I hope people are able to today, especially as I haven’t used the device for this kind of purpose before.

Despite the limitations, I would more than struggle without it, as it massively increases my independence. Now I can communicate with old friends, and have experienced a boost in confidence. I feel less vulnerable, especially as I live on my own. I have also been able to access places I couldn’t before, and I manage my own individualised budget for my social care package. But most importantly, this speech device enabled me to be able to communicate with and advocate on behalf of my Mum before she died.

In hindsight, I could’ve benefited from such a device even when the speech blocking was intermittent, like other people who experience speech blocking, including people who have Tourettes. Not everyone needs a device for constant use. For example, some people with autism will try and fit into societal norms and communicate verbally when it actually causes them physical pain or makes them feel drained and unwell. Some people can communicate verbally only some of the time, which might be situation dependent, but that should be accepted and not questioned if that is what meets someone’s needs.

It took me a long time to navigate services - and I had some working knowledge of the system and legislation

One of my primary concerns is that there are many people whose access to appropriate services are limited because they do not know what services are available, or how to access them, or they require someone to advocate on their behalf, which not everyone has. It took me a long time to navigate services and I had some working knowledge of the system and legislation. Plus there are people with various disabilities or conditions, that following cuts and changes to criteria are no longer receiving any or the same level of welfare benefits and services, but who still have needs that assistive technology could help with. Some people may only need assistive technology and nothing else, but I am also aware that it can be used with a view to reduce costs by providing certain equipment on the basis that less social care or health care hours will be needed long-term for instance. That obviously isn’t appropriate for everyone’s needs. For me, it complements my social care hours.We are in extremely uncertain times and many disabled people and people who are close to us are petrified that those of us who are able to access such equipment, will not in future, due to cuts, as other things are viewed as a higher priority. From my point of view, these are the main general issues to sum up, and I would be interested if this fits in with the general direction of the group:

  • To increase awareness and visibility of different ways of communicating with assistive technology:
  • To challenge the idea that verbal language is not the only or most effective way of communicating for everyone;
  • To recognise that all forms of communication are equally as valid;
  • Identifying ways of reaching people who fall through the gaps in services.