Rugby, relationships and raising a son

Jon Nutman from Trellech, Wales gives his personal perspective on disability and fatherhood.

I was seventeen when I broke my neck in a rugby accident while captaining my school 1st XV on a cold October morning in 1984. As a result I sustained an incomplete lesion at the fifth and sixth cervical vertebra, with total paralysis in my lower limbs and reduced function in my arms and hands. At the time of this event having children was not foremost in my mind, however, the arrival of my son Jake in April 1990, nearly six years later, proved to be the next substantial turning point in my life ....

Rehabilitation in the Spinal Unit did have vague references to the fertility consequences of a spinal cord injury for men. The possibility of never being able to father a child obviously saddened me at the time but my initial focus was on finding my life again post-injury - a house, a car, accessible activities, a sex life, starting new and reviving old relationships after nearly a year being cut off in the safety of the Spinal Unit. I was anxious about taking responsibility for my own body, not thinking about creating another body for which I would have responsibility. My uncertainty about my capacity to adapt well resulted in me consciously terminating my relationship with my girlfriend at the time, perhaps selfishly, to enable me to find out what was now possible by myself, to get angry, to take some risks, without being in an established relationship which undoubtedly I would have hurt.

This period was where I regained my self confidence, positively took control of where I was going, my body’s needs, my independence and also when I realised that advice given at the hospital about sex and conception was at best pessimistic and, at worst, misleading. Perhaps this was due to my age at the time but through talking to others at the Unit, similar Impressions were given to them by doctors and other professionals, presumably to prepare everybody for the worst. I doubt this is necessary and that it would be better to be optimistic, telling those newly injured of the potential, and that achieved by others. More use of talks by experienced ex-patients would have been useful.

Four years post-injury I was much more settled, I had a house, was involved in sport, was studying again and was undertaking much voluntary work. I ran my own personal assistants with money from the then new and novel Independent Living Fund and had been living with my girlfriend H at the time for nearly a year. Whilst travelling in the States, H and myself, left fate to take its course, as H was no longer on the pill. Without going into too many gory details, potential fathering post spinal cord injury is a matter of sustaining erection until spontaneous ejaculation, and having a high enough sperm count at the time (which is often impaired due to temperature imbalances in the body) and all this occurring at the right time for your partner. Obviously these fell into place on the occasion as H was confirmed as pregnant two weeks after our return and, as we didn’t actually have a milkman, I was forced to accept responsibility!!

The initial impact of the news was presumably not different from any body else’s, a mixture of joy and fear. I was thrilled at the thought of being a dad but also worried of the unknown and the change it would bring to our lives, how we would cope and how involved I would physically be able to become. Practically, it meant lots of planning and expense, setting up the nursery and buying equipment. I couldn’t do the DIY, so much of this fell to friends or paid decorators. Also, and importantly, it meant formally living together and as I was a claimant and H was working it meant either H stopping working or me coming off Income Support. Two people become one in the eyes of the state benefit system, interdependence meant that one income was lost and we ended up as being marginally less worse off if H became my dependent on Income Support, than by keeping us on her salary.

Jake was born at about 12 midday on the 9th of April, a day after my birthday. It was apparently an easy labour, lasting about five hours, but it looked bloody painful to me!! I am very glad I was able to be at the birth: the delivery suite at Southmead in Bristol was fully accessible and in fact I’d been able to attend all the antenatal stuff and parentcraft meetings....many dads were not able to do so presumably as they were working. When I first saw him it was the only time that I can remember spontaneously crying.....Weird !! He came home with H about two days later and, mainly because H still felt a bit rough, the ensuing weeks were a period of getting into workable routines, sleeping, feeding and getting bathed and changed, and that was just us!

As Jake seemed to be a very content baby and slept through the night from the word go (with only a few difficult nights due to teething) I found that I was quickly able to do quite a lot with Jake: feed him (as he was doing bottle and breast feeding); change his nappy and help with bathing etc. When it was just me he seemed to be aware that too much struggling was going to be futile, possibly dangerous and prolong the task in hand and I also remember him being able to sit safely on my lap and balance while I moved around with him from a very early age.

What was a problem was handling him between places because of my balance and his rapidly increasing weight. It was impossible for me to get him off the floor and I often struggled to get him safely from his cot to my lap. Perhaps some advice on equipment may have been useful here but at the time you tend to just get on with it.

My relationship with H however was worsening. I suspect that Jake’s arrival had meant that (although both happy about him) we were paying less attention to each other, often doing things - especially going out - without the other, so that one of us could baby-sit. But we carried on. I was more concerned than H who preferred not to discuss it as she tended to get very upset and emotional. I took some action and used more of my assistance money to employ some more help around the house and to help me with what I considered to be at least my share of the parenting.

This, however, did put some more financial strain on the household which seemed to constantly worry H who had been used to her own income, no rent as she lived In my house, and plenty of time and money for socialising. Obviously the impact of this change in lifestyle was harder for H than for me as I was used to living on a fixed income, having been on Income Support for three years. H, however, needed to be able to earn as required. Money was tight at the time, but not many couples had what we had.

H started to work at night to supplement her income, and I took over most of the responsibility at night for looking after Jake. To cut a long and painful story short, things between us became impossible, H was clinically depressed, staying up late and sleeping in in the mornings while I sorted Jake out with my personal assistants much of the time. I was becoming physically ill. I went away for a while to try to rest and find a solution, but returned to more crises, mainly financial. I decided that it would be best if we lived apart, H could go and hopefully become happier and that I would take care of Jake. We reluctantly agreed. H had always said that if anything happened that I should have custody, and I also believed that I was the most capable parent at the time. Jake was 18 months old.

This was a time of anguish and relief, the atmosphere in the house lifted in direct proportion to my increasing tiredness. I went to my Independent Living Fund social worker and requested more weekly money to help me with care needs which had now increased dramatically. Thankfully she was sympathetic and recommended an increase which allowed enough time, for ‘assistance to parent‘. My friends were brilliant. It got much easier with time and as Jake grew. Access to H at this time was limited as she was busy sorting herself out, with house, job etc. My time with Jake became especially important. I was his main security and influence in his life and I believe this period enabled us to form a father-to-son relationship that many men miss out on because of other demands on their time.

Things stabilised, feelings calmed down and Jake got bigger and more independent. We were now much more able to go places on our own, visit people, go shopping, etc. as I could now get Jake in and out of his car seat and he could now walk. I had employed a full time nanny for about 8 months but this had its own problems, and I was glad when we were able to manage with only visiting, rather than live-in, help. Jake started at a local nursery and I returned to full time studies in an attempt to finish my Politics and Economics degree.

I was aware of being a bit of a novelty, as a disabled, single parent dad and probably went down well in the world of the politically correct!! Physical ‘handling’ of Jake became less and less important, although my own difficulty with things like shoelaces, buttons and anything particularly dextrous did serve to teach Jake that, like him, his dad could not solve everything!! What did become more relevant was mental and emotional handling. By this I mean lots of talking through why such and such was as it was, (why I couldn’t walk was of particular interest) and in the process I was aware that Jake would have to become much more independent and ‘adult’ than most kids of his age. I believe that he is outgoing because of my situation and also generally more cautious, perhaps realising that if something goes wrong I may not be as able to get to him as others.

This period went very fast as our lives were busy and Jake was growing rapidly. Jake was seeing his mum every fortnight and although often tired, he never got upset by the situation. We were actually getting on much better now as parents, rather than as partners. I was however not totally happy with the house which as it was on split levels, meant I could not get to all of the rooms. I had a lift but could still not assist Jake in the bath because of the access problem.

This and fate, (it’s a long story), prompted us to move out of Bristol to a bungalow in the country, in Wales, which is where we are now. To many it seemed like a bad time to move as I had another year to complete my degree and I had now established a good network of support, nursery, childminder, doctor, friends etc. But to me it seemed right and I was thinking long term. For Jake, a much bigger garden and a village primary school, and for me peace, tranquillity and much easier facilities. Initially it was difficult, but after a few months Jake and I re-adjusted, made new connections and fitted in well.

Local social services did have to be put right a bit on their presumptions about my situation...., yes, I was the custodial parent, yes, I did need a grant to make things more accessible as, yes, I did live independently and if girlfriends or other people were about then why should they have to do things for me that I would manage perfectly well by myself given a wider door?! I put this down to the officers in question not really being used to being told by the client what it is that I need, rather than them telling the disabled person what it is they can have. I need them as facilitators, not to take charge.

So that’s just about where we’re at now, Jake has started school which is very accessible and progressive for a village primary; a young girl who uses a wheelchair is in the class above!! I graduated on the 1st of June with a 2:1, and am contemplating how to fill that extra time … there’s plenty to do. Jake is entering the phase where I will cease to be his only important influence and I am sure there are many battles ahead.

Looking back, as I have had to for this article, there are perhaps some things I could have improved upon, for example, I still needed to rely on others to get away for decent holidays with Jake … girlfriends, family etc. I am currently trying to raise money for a camper so that we will be even more able to get away, cheaply and quickly, for breaks, day trips etc. Not that I consciously avoid involving others, quite the opposite, I am aware of the need to constantly make sure Jake has contact with his friends and mine; but it is that I constantly strive for the ability to be able to offer him more by myself, to be able to offer him more as a parent, things that perhaps as an able bodied parent I may have taken for granted.

Generally, because Jake is able bodied and I use a wheelchair; I face access barriers but he doesn’t, therefore there will be things that we can’t do together and I try to minimise these, by finding ways around the barriers. Where I can’t or shouldn’t then my role is one of organising a way that he can participate, e.g. organising lessons so that he learns to swim. This is counter balanced by things that I do that he can’t, e.g. my wheelchair rugby.

In conclusion, my experience of parenting is the most rewarding thing I have ever done, at times the most difficult as well. Jake has to, and I hope will continue to, accept me for who I am, as all those around me have to - understanding and considerate to my different needs, but still essentially me. If I achieve this I believe I have done OK.

Relationships over the period have come and gone but I have always had to put Jake’s best interests first, at times in conflict with that of other important people. This will not always be the case. It has been at times lonely and tiring, but I am sure this is the case for all single parents, regardless of disability. This is probably the place to put in a political point that this government fails to recognise; single parents don’t plan to be such nor are they well off, so stop attacking them and give them the support they need to do an important job, bringing up a child!

Lastly, it has been strange and difficult recounting my experiences of the past 5 years as a parent and then compressing them into this article, I hope in so doing I have shed enough light on how it has felt for me to be both disabled and a parent, I know however that it cannot be all that typical!!

First published in Disability, Pregnancy & Parenthood international, Issue 8, October 1994.

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