19 April 2022
Born without a left forearm and using myoelectric limb prostheses from infancy, which utilize electronic muscle signals, actor, psychologist and motivational speaker Angel Giuffria likes to refer to herself as a cyborg. The actress gave a lecture on 7 April as an invited speaker at the Motivation Speech event at the University of Pécs Medical School, where she was interviewed by hvg.hu about the development of prosthetics, the relationship between the human body and technology and the pop-cultural representation of people with prostheses.
Written by Miklós Stemler
- hvg.hu: A few years ago, you talked about how there are now as many options and models of prosthetic limbs as there are different makes of cars. What can we know about your current model?
- Angel Giuffria: The arm I'm wearing now, the Bebionic B3, is very similar to the one in that video. During the epidemic, I had the opportunity to test at length two other hand implant models, the Ability Hand and the Nexus Hand, which really sounds like a cool car brand. They each have different features and capabilities, which is important because I get asked a lot about which hand implants are best for their users. But there is no single answer to that.
For example, the model I'm wearing now is not as sturdy as the Ability Hand, which is twice as big, so it's too heavy for someone with relatively small hands like me. It has a lot of interesting and useful features, but it just wasn't comfortable for me for everyday use. However, it is waterproof, which is more than I can say for the hand I'm wearing at the moment, so if that's an important consideration for someone, it's an ideal choice.
The Nexus Hand can be taught individual gestures and movement patterns, such as using a spray bottle. My current hand is also highly customised: the patterns on its surface are made by a Canadian company and it uses a special FlexCell battery, which makes it lighter, an important aspect for me. The doctors who work on these devices are almost like engineers, and it really feels like being at a car race, swapping different components to see what works best for a particular person in a particular situation.
- A few years ago, the issue of everyday usability was raised in connection with the development of a Hungarian prosthetic hand, and how many people, especially children, find them too cumbersome and difficult to use, and prefer not to use them. You have been using these devices since your childhood; what is your experience in this area?
- My experience is individual in that I was born without forearm and at a very young age, six weeks old, I had a passive prosthesis, which was like a toy doll's hand, to get used to the weight and the two-handed activities. Then, at four months, I was given a myoelectric hand that used the electrical energy of my muscles, so I could move my prosthesis with my own muscles. It was a completely unique case and made possible by several things:
I was developing faster than most children of that age and had a sufficiently high level of cognitive function, and my parents were highly motivated to find the right opportunities.
The timing was also fortunate: it was about this time when the first myoelectric prosthetic limbs for children were becoming available. However, it is usually around the age of two or three when children receive their first prosthesis, which is also the “terrible twos/threes” period: the favourite word for most children at this age is "no!” They don't want to put their shoes on, they don't want to put their clothes on, they refuse food, and throw their toys around to get attention.
In my case, everyone noticed when I threw my arm across the room (laughs).
By then this arm was a natural part of me, and after the tantrum I just put it back on. My mother, who worked as a nurse, had always wanted me to be able to use a prosthetic hand, and if I didn't want to use it as an adult I could do so, but to learn how to use it so that I would have the opportunity to use it.
Children are extremely resilient, and I learned before I was even aware of it. One of the problems with people who lose a limb is that they must learn from scratch what to do without it, but I never had that problem: I had the opportunity for both the one-handed life and the prosthetic limb. The problem I see with children is that they often start using prostheses too late, around the age of three or four, when they already have established ways of being limbless, and a child is not familiar with the concept of delayed gratification.
While an adult knows that with enough practice they will eventually get good at using their prosthesis, a child wants everything right away.
Having said that, the fundamental truth is that there is still a lot of room for improvement in the usability of these devices, they should be much more intuitive, easier, and practical, and I know that there are many other factors: many parents are not aware of the options, and of course there is a lot of work to be done on the accessibility and affordability of prostheses. Advances in technology could be a solution to this:
hopefully we will get to the point in the foreseeable future where it will feel almost natural to put on and use a prosthetic limb.
- The story behind your first film role in Green Lantern was both amusing and thought-provoking; you got the role as the cast were unaware that she was living with a prosthetic since it was so seemingly real. This raises the question of what is the more common reaction: do people with prosthetics prefer to hide or at least not emphasise this fact, as you did, or do they embrace it and take pride in their knowledge and appearance?
- This is a difficult question as for example in my case the answer varies from day to day. Some days I love to show people my prosthetic hand and what it can do, I love to show off the individual lights and embellishments on it, other days I just want to shop in peace, and I don't need to be asked 400 questions about whether I'm wearing a bionic hand. I need my prosthetic, I need its knowledge, but I have absolutely no need to be the ambassador for bionic limbs in every single store (laughs).
However, it is important to have different options. In my experience, it is common for people who have lost a limb to choose the most realistic option first. It takes time to come to terms with the fact that you have become a new person in some respects, and then it is often the case that you choose something else that suits your tastes and personality.
The story of my first film role is instructive for me because at that time I still had the mental barrier that I wasn't right for it. Previously, in every film and TV show I had seen, people without limbs were either played by actors who were not limbless themselves, or it was part of the story, i.e., they were not normal, ordinary people who happened to be limbless. We didn't see people without limbs shopping in a shop, being late for class or working in a flower shop, and we are just ordinary people doing ordinary things like that. Some twenty percent of people in the United States have some kind of disability, but only a fraction of that is the proportion of such characters on TV and in the movies.
- A few years ago, RJ Mitte, best known for Breaking Bad, who lives with cerebral palsy, said in an interview that the only TV character he could identify with as a child was Timmy from South Park. What was your experience like in that respect?
- It's a funny story, and my experience is very similar. The first character like me that I remember was Captain Hook, who, needless to say, was not a very positive character. Ironically, my first film experience of a character like me in a positive light was an animated film, Finding Nemo has a 'lucky fin', which is nothing more than a stunted right fin, so you could say he is disabled, but that wasn't what the film was about, it was a natural part of his life, like my life with a missing forearm.
The way they dealt with this in the film made it extremely easy for me to explain to the little kids that I was born this way, it's not a negative thing, because Nemo can do a lot of things, he just has a lucky fin. There were many times in the past when a child my age was scared of me and cried because I was strange and different, he had never met anyone like me, and then this cartoon character came along and changed things in one fell swoop.
Later on, Furiosa from Mad Max was really cool, she's a great fighter and a better shooter than Mad Max, even though she's missing an arm. And it's all very natural, no one is above it; Furiosa is just like that. Charlize Theron was amazing in the role, and I was very excited to see her playing a character like me, but then I realised that most people didn't see a woman with a prosthetic limb, but Charlize Theron playing against a green background. I understand of course that she brought the audience into the cinema, but if we don't get roles like that, then there will never be a chance for a prosthetic person to be the person people go to see a film for.
- So far, we have talked about disability when it comes to prosthetic limbs. However, there is another important aspect of this topic, which is no longer exclusively a science fiction subject, and that is the expansion of the human body's capabilities through technology. You semi-ironically call yourself a cyborg; how do you see the future in this area?
- It's interesting because when I first started wearing this hand, I was approached by the biohacker, transhumanist community. I was born without a forearm, so this device gives me opportunities that I would never have been able to do without the technology. And as the tools evolve, we may get to the point where this will not only be true for me and people with conditions like mine, but for those who will have all their limbs. But I have no idea when we will get there.
The main problem is not with the technology, as there are already prosthetic limbs and humanoid robots that can perform sophisticated movements, but with the integration of technology and the body. There is a lot of research and development going on in this area, for example, I recently spoke to engineers who are developing implantable electrodes that can facilitate prosthetic control. It's important to talk about this and the potential social impact, but we're a long way from someone replacing their natural limb with a cool prosthetic - for example, I'd need a waterproof prosthetic arm (laughs).
- What other exciting developments have you seen recently and what do you see coming in the near future?
- The implantable electrodes I mentioned before certainly belong here. Currently, the electrodes that control the lever are located on the surface of the skin, which has serious limitations. They are affected and limited by many factors: changes in temperature, changes in body weight or the saltiness of our skin. Implanting electrodes would eliminate all these distractions and allow much more sophisticated movements. In addition, there could be a huge improvement in haptic feedback, giving real biological feedback when we touch something.
An important development is the adaptability of the prostheses. This can cause difficulties, for example, if someone is missing a hand above the elbow, because then a separate strap is needed, and this is even more true for prosthetic legs, where you often have to wear a huge bucket-like thing. The new method involves inserting a titanium rod into the bone and simply attaching the prosthesis to it. The battery technology is also a key point, because these modern prostheses are as prone to running out of power as mobile phones - luckily, I brought a charger for this trip, because I'm quite forgetful otherwise (laughs). A prosthetic leg can last up to a week in many cases, but there's much more room for batteries than on a forearm prosthesis.
By the way, a lot of the technology that could make life easier for people with prostheses already exists, but we are not an interesting enough market segment to get it to us quickly - after all, everyone in the world is buying mobile phones with the latest technological advances, but there is much less demand for prosthetic limbs. One very exciting project is Atom Limbs, which grew out of a DARPA development, with developers from Microsoft, Google and Amazon, who have noted how outdated the technologies used in these devices often are. I am very grateful to them for agreeing to work on this for less money and prestige.
I am very happy that multi-articulating hands are now available for children. For me, for a long time, only hands that could be used for closing and opening movements were available in a single colour, whereas nowadays young children can tell you what their prosthetic hand should look like. I also work as a camp counsellor and many children choose their favourite fairy tale characters and superheroes as illustrations. This is both a way for them to show that they are not ashamed of their prosthetic, and maybe there is someone in their class who likes the same stories and characters as they do, and it gives them an opportunity to build a relationship.
In my childhood and adolescence, there were long years between technological innovations, but now there are constant leaps and bounds, and I'm constantly being approached by enthusiastic engineering and medical students with ideas. It is very important to stay enthusiastic, as you can make a difference to so many people's lives.
The interwiew was originally published by hvg.hu.