Be joyful in hope, patient in affliction, faithful in prayer
A Written Conversation with Henrietta Freeman
Henrietta Freeman is a quadriplegic in her early 30’s who has a neuromuscular condition which continues to worsen, she is non-verbal and relies on around-the-clock care to help with just about every aspect of her life.
A bible verse mentioned on her X profile:
“Be joyful in hope, patient in affliction, faithful in prayer” - Romans 12:12
I have never reached out to talk with someone who is non-verbal before, but I decided to do that with Henrietta. I first thought about asking a friend of mine to re-enact her voice - reading out the responses Henrietta wrote back, but that didn’t feel like the best thing to do, and I also explored if I could do it with the help of AI. Henrietta answered these questions last summer, and now I have decided to just release it in written format to give her the authentic voice without any manipulation.
1. Tell us a bit about your condition, and your journey through it in your life? How has your condition evolved over your life, and how have you adapted?
I was born able-bodied. When I was 18 months, out of the blue, I developed a neurological condition. No one knows why and my condition has no name. I attended mainstream school. For 14 years I was independent using crutches. I then lost the ability to walk and became a full time manual wheelchair user. At 21 years old, life really changed, to cut a long story short for 5 years I was paralysed from the neck down with no movement and non-verbal, reliant on a feeding tube – though I had normal food blitzed rather than the default processed formula the NHS gives as standard. I used a powered wheelchair and chin control. Apart from being able to use my eyes to use my eye gaze communication device to communicate (it tracks your eyeball, best to look it up for a better explanation to how it works, it’s superb). I still maintained a very good quality of life. During those 5 years I became seriously unwell and nearly died. I was on a ventilator 24/7 and was a dangerous low weight. I thankfully regained arm movement and life is unsurprisingly much more straightforward now! I do have memory loss and minor but sometimes difficult cognitive issues from being very unwell – I guess that’s no surprise. I deal with it well after realising it was an actual problem. Again, it is what it is.
I’m fortunate to be an adaptable person and that’s why I’m very much ‘what will be, will be’ and I’m a medical mystery which I’m fine with. I think that plus dark humour is the best way I’ve got through life (I prefer not to use the word cope!). Being a medical mystery could’ve driven my parents mad to try to find the answer that they were never going to find, I credit them for being level headed people, naturally positive people and similar to me in dealing with things as they come – that’s where I get it from as I’m the same and my younger sister is too. Having family or friends support I’d say is crucial to adapt. I’m also religious and that has helped by being a comfort especially at the more difficult times.
2. Tell us a bit about your love of sports.
I come from a family of Liverpudlians so football was my first love. I support Liverpool because in most families it’s a case of what shirt, Liverpool or Everton, is given to you first! I played able-bodied football at school and for the local girl’s team. When I became a full time wheelchair user I quickly got involved in disability sport – wheelchair basketball, tennis and went to the annual WheelPower National Junior Games until 18 years old. I met so many lifelong friends there and it was a chance to try sports and a great social event too! I fancied a change from team sport so I decided to try out field athletics. I took up javelin and discus (sitting on a throwing stool, strapped in for dear life!) and represented Team England at the School Games. My supportive mum trekked across the country in awful weather, that’s outside sport for you! When I was paralysed from the neck down I played boccia (similar to bowls), ironically a sport that I thought was dull. I ended up loving it and played weekly! I played powerchair football throughout being a powerchair user and still do, gone 360 back to football! Sports are an essential part of my life and has been great socially. I’m a massive American football fan too, Baltimore Ravens are my team. It’s a perfect sport for insomniacs as the games can be at 1am!
3. How do you think football has changed over the years – comparing the higher leagues with the lower ones.
Unfortunately I find football has become less interesting to watch. I’m nostalgic and long for the days where there were more individual players and the Premier League wasn’t a methodical style. I still enjoy watching it but VAR hasn’t helped as the game is slowed down even more. I love going to Anfield, there’s no place like it. Lower league football is more enjoyable to watch as there’s no VAR. Watching it you know particularly the even lower leagues the players are juggling part time or full time jobs also. The magic of the FA Cup although it’s been degraded by the force that is the Premier League, is a competition I watch when even Liverpool aren’t playing. Early rounds of that and also the League Cup there’s no VAR either. It’s football as it should be. I’m going to be honest here as I’m asked this question! I don’t enjoy watching women’s football. I’m all for them having opportunities but to me it’s a different game. The physicality and speed of men’s football is better to watch.
4. Due to you being non-verbal, what alternative methods do you use to communicate? And what other ways do you think can help people like yourselves to communicate with people?
I use what’s known as an AAC (Augmentative and Alternative Communication). Mine is an electric device, an iPad Mini 6 that has apps on it that provide communication. When I was non-verbal and couldn’t move my arms, I used an eye-gaze device, where the electronic device tracks your eye movement. The technology has come on so much and no longer are people stuck with very basic and more tiring communication methods, such as alphabet boards. Also, these AAC devices have more ‘voices’ choices – accents, languages. Gone is the only option of ‘talking’ like Stephen Hawking! I have a phone app that is type to talk, this is useful when I only have my phone with me. There are many types of AAC devices: not only electronic, there are alphabet boards, word boards. There are methods from the basic to the more high tech like eye gaze. A variety of people need AAC – physical and learning difficulties and just because two people have the same condition, their speech / language difficulties can vary hugely. They may be; non-verbal, minimal speech, language skills or a mix. It’s crucial to treat an individual as exactly that and for them to be equipped with what AAC method gives them the best communication possible.
5. Do you feel you are able to have an independent life? And if yes, what helps you achieve an independent life?
As independent as I can be. I have an assistance dog who’s an absolute star, he’s been with me for over 12 years, he’s retired now but still does tasks for me around the house. Tasks such as picking up items off the floor, retrieving items, fetching things etc. When we went on our training before he came home with me, I was verbal so commands were verbal commands. He was brilliant when I became non-verbal, as I could make noise that’s how we communicate. He’s just wonderful I could talk about him all day! Technology allows me the independence of communication. There are now apps that are mainstream where lights and temperature in the house (Environmental controls) can be controlled by phone and AAC devices. Siri isn’t for me though! My powered wheelchair allows me the independence of movement. My wheelchair accessible vehicle means I can travel further afield, I have a driver and my wheelchair locks into a dock in the car floor so I can safely sit where the passenger seat would be.
6. Do you have any carers/PA, and how is your relationship with them?
I have a wonderful PA who has been with me for 6 months. I call her my PA as she does more than intimate personal care. My mum and my sister are also my PAs and I employ them, they are paid. Having close family members makes intimate personal care less awkward! I don’t use agency care as I’ve found it to be unreliable and in recent years, thanks to gender ideology and the clashing of ‘characteristics’ in The Equality Act, as well as the Gender Recognition Act (both acts need to be abolished), a man is able to falsely identify as a woman and can now do a women’s / girl’s personal care. I know women who have had men turn up, some have been able to realise and send them away. A 2020 report by the Care Quality Commission found women receiving care were 3 x more likely to be victims of assault than men. but as a woman who would be in bed and non-verbal, I no longer take that risk.
7. So, I read somewhere you did your degree in Social Sciences from Open University, tell me about your experience, about your studies and the university itself?
I Unfortunately can’t remember any details of this! It was before I was seriously unwell, and part of my problems now is memory loss of some years and events. One experience happy I remember is having a paid retail job. I loved this and my disability didn’t give me an advantage over my able-bodied colleagues and those who applied for the same job, rightly so, I am extremely anti-DEI policies. They don’t help disabled people (or any ‘minority group’) instead we can be seen as tokens. Life should be a meritocracy, equality but never equity.
8. Why are single sex spaces important? And especially when it comes to far more vulnerable people like yourselves?
Same-sex spaces are important for both sexes. Women are likely to be a victim of sexual crime. Public places e.g. toilets, changing rooms, hospital wards are a place where dignity and safety of women must always come first. Refuges and rape crisis centres for women should never include men. Women’s same-sex spaces keep all men out because a man who is a predator isn’t wearing a ‘I’m a predator t-shirt!’ It’s not saying that all men are predators, of course not but no man with respect for women is going to enter a women’s same-sex space. These spaces and rights are even more essential for disabled women. The stats on sexual crimes against disabled women 16-74 years old are horrific, unfortunately I can’t find more recent statistics but 2019 – 2020: any sexual assault including attempts: disabled women 5.0% compared to able-bodied women 2.8%. Rape including attempts disabled women 1.9% compared to able-bodied women 0.6%. Women with learning difficulties are known to be the disability category at the highest risk. Disabled women’s fears aren’t in their head or delusional. We must bear in mind that there will be disabled women who because of their disability, some may not know what’s happened to them and there are others who won’t be able to tell anyone.
9. You are in a position, that people normally be more compassionate towards you. So, you can see from your experiences this phenomenon where people can have misplaced compassion. Do you think this is why people overindulge in woke ideology? Especially those who don’t know about the underlying subversive political ideology, and just wanting to be nice. While the bad faith actors take advantage of their nature?
What I would say is most disturbing about woke ideology in relation to disability (I don’t call it the disabled community as that makes me cringe, there’s no such thing) in society is the capture of charities and organisations who used to be focused on disabled people only and / or say they are. Nowadays, many you’ll find have ‘teamed up’ with so called trans people because they see them as a minority and a vulnerable group, same as how they view disabled people. We’ve had charities and organisations team up with Stonewall. Unforgivably, none of these charities or organisations have spoken up to defend the rights of same-sex care.
Away from the disability sector and in general day to day life, I must admit I’ve not encountered anyone lacking compassion. I think this maybe because, unlike some disabled people, I don’t see every challenge, barrier or comment as ‘ableism’ (another phrase I’m not keen on because it suggests only able-bodied people can be anti-disabled). Living with the attitude of taking offence to everything isn’t healthy! Yes I know I’m a disabled person but it’s not my identity.
10. What are some of the controversies surrounding you? Would you like to talk about any of them, and explain them?
I don’t think there are any controversies, I’m not that well known! I would say after speaking out against the erosion of same-sex care, ‘trans allies’ have attacked me online, so do some disabled people as they see so called ‘trans people’ (no such thing) as fellow minorities so they stick together. That’s ridiculous as, like the Equality Act, a minorities’ rights are in direct violation of another minorities’ rights! Attacking me online has no negative effect on me, instead it spurs me on to help regain the same-sex care rights of disabled women and children.
11. What are you up-to these days? Would you like to share it with us?
For the past 3 years I’ve been unwell with a condition called Mast Cell Activation Syndrome (MCAS). I describe it as being allergic to everything without having an allergy. Until last September it was extremely disabling and stopped me from living my life to the quality I had. Fortunately from medication I’m now able to function far better although it’s a challenge. In October I started volunteering with a charity that supports people with MCAS. I take pride in how I’m able to support people and it gives me a sense of purpose.
12. Anything else you would like to talk about.
My religion is important to me. I follow the Catholic faith. My faith has guided me through difficult times and made me even more grateful for the good times and what I have in life. Seeing Christianity shoot itself in the foot in this country is embarrassing. One of the main causes of this is the Church of England becoming woke and churches closing their doors during the Covid lockdowns. We are a Christian country and everything this country is based on is due to Christianity. Fortunately, there is hope in how the non CoE churches are thriving. The CoE needs to wake up before it’s no more, the heads of the church have become too comfortable. It is ultimately up to individuals whether they choose to embrace their faith and commit to it but the CoE and all Christian authorities should be led by the teachings of the Bible. No other poisonous and damaging ideology.
Thank you for reading, please give Henrietta Freeman a follow on X, and show her some support. You can read a bit about her campaign for same-sex care on Telegraph article published last year in May 2025.
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That is one of the most remarkable and inspiring articles I have ever read. We can all learn from it and take less for granted.
A very special lady.
Thank you Momus.