Disability Support and Me: How a Disability Support Service Helped a Student with an Acquired Brain Injury Progress and Succeed at Postgraduate Level
Introduction
In this article I would like to share my experience of accessing support at the University of Galway as a postgraduate student returning to education after acquiring a brain injury (ABI). I acquired my brain injury just over ten years ago which has left me with cognitive impairment and many invisible consequences such as fatigue and pain. I basically need more time to do things now than I used to pre-injury. I graduated with my Ph.D. a few years prior to acquiring my injury so I have a love of research, particularly social research focussing on the wellbeing of children and young people. I was a primary school teacher for 18 years pre-injury and have been working in higher education post-injury. As a social researcher, I have a curious mind and love knowing how things work, why people think the way they do, and why people feel the way they do. A couple of years after acquiring my brain injury I began to wonder why my brain didn’t work the same, why I felt the same but different, and why I could still do the same things but not in the same way.
While attending a community rehabilitation service in Galway for two years I began to write a blog about brain injury, brain injury support and my personal experiences of ABI. I can say without a doubt that my outpatient rehabilitation at the National Rehabilitation Hospital, my community rehabilitation programme at Quest Brain Injury Services and attending my neuro-psychologist who ‘got me’ changed my life, and saved my life. From the moment I began to receive rehabilitation and psychological support I started a journey of knowledge, self-care, self-growth and acceptance because of the amazing people who supported me in these services. I relate to the concept of a journey because I see my life as a path of recovery and self-care – an ongoing journey of improvement, maintenance and resilience, and it is a journey I am grateful to be able to travel. My rehabilitation led me to think about how I could support others by sharing my lived experience and educating myself about how a child or adult can live their best life with an ABI - the answer for me was health promotion. I researched post graduate programmes and decided on the MA in Health Promotion at the University of Galway.
Approaching the Health Promotion Programme
From the moment I was interviewed for the programme I knew it was for me. I decided to be open about my brain injury from the start, which was very scary but the lecturer who interviewed me for consideration for the programme was very understanding and put me at ease. I would not have had the courage to disclose my ABI without having received rehabilitation. Rehabilitation gave me the understanding, acceptance and self-confidence to be able to disclose my invisible disability to someone other than a family member or friend. Having looked at the University website for online support and ideas to help me organise my life/study/work balance I came across the Disability Support Service (DSS). Once I got settled into the programme as a part-time student (the majority of which took place online due to COVID-19 restrictions) I contacted the DSS. Looking back now I realise that making that initial contact with the DSS was the best decision I could have made to help me succeed at college, and I would advise every student with a disability, whether visible or invisible to do the same.
It took me years to be able to disclose my ABI, partly because I ‘looked fine’ so others assumed I was ‘fine’. To be honest, I lacked the confidence to be able to say ‘I have a brain injury’ without breaking down. From the moment I engaged with the DSS at the University of Galway I felt at ease. I had an emotional online first meeting with my appointed disability advisor, but she took it in her stride - tears and all! She was patient, kind and encouraging.
My experience of the needs assessment process
Everything fell into place for me following my first meeting with my disability advisor who conducted my needs assessment. This involved a two-way open conversation where we discussed the consequences of my brain injury, my past education and work experiences, the study and assessment requirements of the programme, my goals and my feelings in general. Overall it was a space for me to talk that felt supportive, friendly, trusting and safe. I knew I only had to talk about what I felt comfortable with, and that I could stop talking about anything that made me feel uncomfortable at any stage without judgement – this really made me feel more relaxed.
Following on from my needs assessment I was assigned an occupational therapist whose role was to help me participate fully in college life and to engage in my academic study. From the word go I felt at ease with my OT. She spoke to me in an open, friendly, supportive way and everything she suggested was very much based on my needs as a student with a brain injury. She was also very experienced in supporting people with ABI which was obvious in the way she supported me and spoke to me. We had regular online meetings which were set up at times that suited both our schedules. The regularity and consistency of the meetings kept me going – just knowing that there would be a follow-up or a check-in a couple of weeks later was very reassuring and helped to keep me on task with my college work. Sometimes I would have small goals to try to achieve or study/lifestyle strategies to follow or keep track of, such as remembering to manage my fatigue and to pace myself. The OT team conducted an online fatigue management programme which I completed and found very beneficial. I also had access to a mental health programme if I felt I needed to attend it.
The role of Assistive Technology
In addition to my OT I was assigned an assistive technology advisor who gave me excellent support in the area of assistive technologies which were suitable in supporting me in my study and assessment requirements. For example, I learned the importance of using dictation software to help manage my fatigue. MS Word has a dictation function built in which I found useful. I also used Read and Write software and Grammarly software which were really helpful for writing assignments. Again I could contact my assistive technology adviser whenever I needed support, and I could meet in person or online.
Other Support
As well as support from DSS I was given reasonable accommodations for the one written exam I had to complete – this meant I was given extra time to complete the exam which relieved a lot of worry and anxiety for me. This accommodation was organised by my disability advisor with my lecturer and was done so in a supportive, confidential way.
My disability advisor coordinated all my support and was there to direct and help me in whatever way I needed to the best of her ability and within her remit from the University. I never had the experience of accessing a DSS before, however, I was lucky to have worked in higher education prior to starting my programme. This meant I had the knowledge of how a DSS can support students, only this time I was the one accessing the service instead of recommending it, and I am so glad I did. The collective nature of my support team meant that I felt motivated to keep going even during the tough times. I never felt alone when I was under pressure with my workload as I knew I could get in touch with the DSS and someone would get back to me.
Looking back on the experience
Looking back now I feel I was being mentored as well as being supported. I developed a close relationship with each of my advisors. This relationship happened organically during a period of sustained support over two years that was based on my needs as a student with a brain injury. I graduated in 2022 and am now a qualified Health Promotion Practitioner. I couldn’t have asked for any more in relation to the support I received at the University of Galway, and I feel very grateful to all the people who supported me in my studies. Inclusive and confidential support is there for every third level student with a disability, you just need to take that first step and register with your institution’s DSS – it will be worth it!
