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Living with a disability in a pandemic

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James Rickard has Cerebral Palsy and is the Diversity and Inclusion Manager at Rehab Group.

Hello from Dockland Dublin were the streets are eerily quite, and all the normal activities and the regular hustle and bustle seems to have stopped.

As a young person with a disability, I always attempted to keep up with my peers, be one of the lads. So being out involved in political, social and community activities was second nature to me. At one time, I was more likely to be found in O'Neil’s of Suffork Street, or Mulligan's of Poolbeg Street rather than at home, and even if that was some time in the past, the need for interaction is still strong.

Since this outbreak, I find my previous notions of independence, or should I say inter-dependence, being called into question. I reflect back to a time when I would have taken exception to the offer of help to board a bus, or to carry my shopping, now with the current restrictions, support is a wonderful gift.  In times like this, where we are all asked to isolate, it is commonplace for all of us to feel a level of stress and concern. Such worries include;

Fear of self or a loved one becoming ill - I realise if I become ill, self-isolation will become near impossible, even the process of washing my hands is made more difficult by the stiffness of my fingers and the rigidity of my hands. So, other day to day functions would be extremely difficult. I need to keep well so I can get the assistance at home which I need, and the support of my colleagues and friends to get through this.  

Fear of separation from loved ones due to quarantine or social distancing requirements. As a single person, I live on my own, so apart from normally meeting people for lunch, coffee or going to concerts at the National Concert Hall, which forms a big part of my life, I rely on phone and social media to keep in touch. This is the same for most of us. In this respect, my friend have been great, I don't feel isolated, and I feel connected.

Fear of losing employment and financial implications of same - I am working from home, hoping that my contribution to the teams, and to our work community to assist our common aim, is of worth. I am aware I am in a privileged position, and how this must have upended a lot of people’s lives. I hope when this ends, and it will, we will all help to create a more engaged and inclusive work culture. 

Feeling powerless to the rapidly changing and evolving pandemic situation. I remember from my studies in psychology, the concept of 'locus of control'. Locus of control is the degree to which people believe that they, as opposed to external forces, have control over the outcome of events in their lives. The concept was developed by Julian B. Rotter in 1954, and has since become an aspect of personality studies. A person's "locus" is conceptualised as internal or external. Individuals with a strong internal locus of control believe events in their lives derive primarily from their own actions. In the current environment most of us feel that we have little or no control over the present situation. My own strategy is to be aware of what is still in my control, such as how I structure my day, setting out what I can do or have to do in a particular day, and realising my own limitations. I think it is important to keep it in the day, and not be thinking too far into the future. Look forward in hope, but concentrate on today. 

Feelings of anxiety, boredom, restlessness and loneliness due to extended periods of isolation - I am fortunate I have a passion in classical music and literature and they are my go-to activities when I begin feeling any or all of the above, be kind to yourself, indulge a little

Fear of "what if" scenarios in the absence of certainty - I feel this is not the time for hypothetical thinking 'it is, what it is, live in the current realities, and try not to be overwhelm 

I know all this will be much harder for some people, especially parents, who have reported being bombarded with wonderful free resources and tools from schools but also feeling overwhelmed and guilt-ridden for failing to keep up with home-schooling activities.

In addition, others have been thrust into a primary caregiving role for sick or older family members which has a particular level of demand as external resources may not be available or indeed may be restricted by concerned families due to risk of exposure.

The dual demands of responding fully to a public health crisis and the need to keep working mean that it is imperative for us all to follow the guidance of health professionals and do everything in our power to protect the health and wellbeing of all individuals.

I hope these few thoughts make sense and some of you can relate to them, and by having such conversations may help us to feel more connected and less isolated. Take care of yourselves and others and we will get through this together.