About the Founder
My name is Anastasija Kudrjavceva (also referred to as Ana). I am a twenty-two-year-old female with multiple health conditions, including visual impairment and autism. My overall goal in life is to support other individuals with disabilities, including those with visual impairments, which is the main purpose of Needs Action Group.
I am severely blind; I wear glasses due to having the ability to see in my right eye. However, my left eye is completely blind, I refer to it as “the dead eye.” My sight loss journey began in my early years of life, in fact as soon as I was brought into the world. I was born in Latvia in 2002, in a small town called Rezekne. At birth I experienced retinal detachment in both eyes. I was under-developed and had to be born prematurely. While being blue-lighted in an ambulance to Riga, the capital city of Latvia where I would be placed in an incubator; there was extraordinarily little to no blood supply to my eyes, which led to the retinal detachment. The laser treatment that was supposed to save my eyes nearly burned my eyes out altogether. Luckily, they managed to save my right eye. But my left eye was damaged way too severely. We believe that this was intentional, as the practitioner that carried out the laser surgery was unqualified and had little to no skills of what she was doing. I am never going to be able to see anything with that eye. There is nothing that can be done about it now. As the treatments went on, I was eventually diagnosed with retinopathy of prematurity, retinal dystrophy, and glaucoma. As a seeing person for you to look at something up/down/left/right you can turn your eyes to look. For me, because I do not have any peripheral vision, my visual field is exceedingly small, so I would have to turn my whole head instead. This is what it means to have central vision…where you only have vision in the middle of your eye, and you have to “aim” your head in order to look in a specific direction.
My family really did not know how it was going to be for me as a blind person. They did not have any VI training so as a little girl I was crashing into everything. And to be fair I still do. They did not know how I would find my way around – or not – and where I am going to struggle, or not struggle. It was trial and error. With every injury and crash it was like aha! We need to fix that. They had the common sense not to leave stuff on the floor and not to leave any sharp stuff lying around – because I am physically not going to be able to see it. But they are not going to have a detailed idea of my needs until they see it for themselves. And they have seen it for themselves. Quite a bit. Of course, it all was a learning experience for me as well, which is, probably, why accessibility and health & safety are always my priority when supporting individuals with disabilities or specific needs.
In September 2014, I moved out of Latvia due to the lack of disability support within the country. I am now in the UK, living here for almost ten years. Coming here was an incredible turning point in my life, I began to access health and social care that I did not even know existed, I definitely feel more valued and respected here than I would back in my own country. Slowly, I began to learn about my own struggles and understand myself better, the life-saving diagnosis of Asperger’s had helped me to understand why I have fixed outlook on specific matters, as well as the reasons behind my sensory overloads.
Hearing – if I can even say that – is pretty much a replacement for my vision.
When I have an ear infection it makes it exceedingly difficult for me to know what is going on around me.
For instance, if I had a poorly ear and I could only hear out of one ear, I would not hear what is going on in the room: who is going where…. who is doing what. I would not hear you coming. I would not even know you were in the room, because I did not hear you walk in.
If you say ‘hi,’ it will seem to me like you have come unexpectedly, out of nowhere – because I had not heard you coming.
It is essential for me to have full hearing so I can hear every detail of what is going on around me… where there are people. where there are not. And outside if there are vehicles.
The easiest way for me to tell if a window is open in a room is if I can hear the traffic outside. I may not have seen it. I may not have felt any draught. but I can hear the traffic or the noise outside. Sound isolation has always been the key to sound clarity around me. The better sound isolation, the clearer I can hear what is going on around me. Carpeted areas are brilliant for me. I love areas like studios, production rooms etc. because they have particularly good sound isolation. There is no echo. When there is perfect sound isolation, you cannot hear what is going on elsewhere.
To add to that, I can only recognise people by hearing, as I do not have enough vision to see and recognise faces. All faces look the same to me…I see a pair of eyes, a nose, lips, and a cheek either side of the lips. These are the basic facial features that my eyesight allows me to recognize, but I am unable to tell any difference between the faces of different individuals. Likewise, I am unable to determine an individual’s facial expressions and other visual cues. It is only by hearing that I can tell if someone is laughing, crying, happy, sad, or angry. However, an individual’s voice is not always very distinctive, so in many cases, I may not be able to identify a smile or a sad expression. To be honest, I cannot even tell my own facial expressions, I can never know when I am smiling or what kind of look I might be giving to someone. For this reason, I rely quite heavily on things like hugs and tactile physical communication. A hug, a kiss or even to blow a kiss. Obviously, not being able to have that physical interaction with other people (either due to lockdown or geographical distance between individuals) often makes communication difficult. In these situations, I rely heavily on the power of a written word, which is why Needs Action Group primarily operates in writing including emails and letters. However, I am also very aware of other people’s communication needs and barriers, which is why we aim to be flexible when an individual expresses their needs when either teaming up with us or seeking our help.
I do not particularly feel at home in the 21st century. I do not feel I am living in the time I belong. Village life is what I really miss – not that I have ever lived that way. For example, if one villager were sick, the whole village would take care of them. If one villager died, the entire village is going to cry. If one villager is happy the entire village is going to hug, kiss and bury them with flowers. That is the life. That is the value that has disappeared.
However comfortable, or accessible or loving the lifestyle that we have these days is, in the past there was a better up-bringing in the family. There were always high levels of respect for the leader of the family who rules the house. People say to me: which era have you come from? It is 21st century! That is the way I see things and the way I want life to be. That is one of the reasons behind the establishment of Needs Action Group. Not only does it allow individuals with special needs to help others in their situation, but it also allows people to gather together to help another person/people, which is what villagers used to do and how they used to live back in the older years.
Since moving to England, I have experienced special education, health, and social care support, as well as encountered different individuals with a variety of disabilities, long-term conditions, and daily care needs. Unfortunately, nowadays, we see many people buried into their own disability and often do not see other people’s impairments, even if those other people suffer the same condition as them. However, luckily for us, there are still people who care for the wellbeing of others and are willing to share their life experiences to help others, as well as recommend some of the services that they found helpful. This is the main purpose of Needs Action Group; we base our recommendations on experience and any additional research.
I felt inspired to start this group after spontaneously teaming up with a close friend to help another individual. It was a relevant collaboration, as my team member had the same disability as the service user. A one hour’s worth research took place to find an organisation that would help the service user to overcome a specific problem that they had. This experience made me realize that this type of collaborative work should be done more regularly, which would be beneficial not only for the service users, but also for the team members themselves. My vision for this group is being able to work effectively together when finding the right health or social care services for one or more individuals at once. This can be especially helpful when statutory services are either too slow or are not available, in which case, alternative organisations need to be found urgently in order for the person to receive support in a timely manner.
Needs Action Group
founder.needsactiongroup@gmail.com
01217512162
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