Spina Bifida: beyond the chair and stick

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Emily Steward

We talk to Emily Steward about living with spina bifida, mainstream schooling and negotiating London in a wheelchair

SEN Magazine: Please could you describe your diagnosis of spina bifida

Emily Steward: Spina bifida (SB) is a congenital malformation caused by the faulty development of the neural tube. Translated literally, SB means “split spine” and is found where one or more vertebrae fail to close in complete rings around the spinal cord, leaving a segment of spinal cord exposed and unprotected.
There are three main types of SB, of which I have the most common and most severe, myelomeningocele, which occurs in about one in 1000 births. With myelomeningocele, the spinal column is open along several vertebrae, allowing the cord to protrude out of the opening.

Membranes surrounding the spinal cord form a sac in which cerebro-spinal fluid, tissue, nerves and part of the spinal cord remain until corrective surgery takes place to close the defect. By this point, the spinal cord is malformed or has been damaged. Spina bifida is further described with reference to the level of the defect, that is, which part of the spinal column is affected, with mine presenting as L4.  With SB often comes hydrocephalus; mine spontaneously resolved at sixteen weeks.

SEN: How has spina bifida affected your mobility?
ES: SB affects mobility in various ways; for me, this means that I tire easily when walking, due to an awkward gait, making a wheelchair vital for long distance travelling. Up until the age of around seven, my family would push me around in a buggy, until I decided that more independence was needed and I was fitted for my own wheelchair (which was green and very fetching). Whilst my wheelchair is vital when I need to cover long distances, such as when I am out shopping with friends or when I am away from home, I am fortunate in that I do not require it for day to day living. I walk with the aid of one crutch and have a modified car, making it much easier to get around. At university, I use a mobility scooter, and I’ve had a few races with the elderly of London on it.

SEN: What type of school did you attend and how do you feel your school supported you?
ES:
Throughout my entire academic career I have attended mainstream school (local primary school and local grammar school) with a statement of special educational needs to ensure that my specific needs were met. In terms of support, my schools were fantastic. At primary level, I had the support of a full time assistant who helped me with practical activities, such as science experiments, PE and catheterising at lunch times.

As I grew older and more independent, my support needs changed and my senior school was extremely accommodating. I was provided with an extra set of textbooks, to avoid carrying unnecessary items to and from school, and an extra locker, so I could store things at different ends of the campus. A disabled toilet was also built on site, to which I had almost exclusive access. Right the way through, school staff were incredibly supportive and they helped me to achieve my full potential by making modifications as and when the need arose. My schools employed an open door policy, meaning that I was not embarrassed to admit when I needed help, and they were quick to act in consultation with myself and my parents.

SEN: How did other pupils at school behave towards you?
ES: Mainstream schooling was 100 per cent the right decision for me and I have been blessed with the most amazing group of friends. I have been fortunate in that I have not experienced bullying at any point in my school career, with the exception of an incident of name-calling where a child was ignorant of my disability. The school dealt with this well and the child went on to be a good friend of mine.

My schools have been very pro-integration and have sought to educate all pupils in the diversity of life, and once the initial interest surrounding the crutch and the scooter subsided, I became just another one of the pupils, which allowed me the freedom to learn and behave as the rest of my peers. My year group behaved incredibly and made sure that most of the group activity was a viable option for me.

SEN: How do you feel spina bifida affected your schooling?
ES: In many ways, I feel that SB enhanced my experience of school. As a result of being statemented, I was able to play an active role in shaping my education and determining my path, through reviews and discussions with staff. While SB did affect schooling in some perceivably negatives ways (time out for surgery, tiredness and not being able to take part in some areas of the curriculum, such as PE and some school trips), I feel that my experiences have been richer than many of my peers. Not only did I see school from the perspective of a pupil, I was also able to have a glimpse behind the scenes at all the hard work staff put into making a pupil’s academic experience what it is. It certainly made me think twice before moaning about school. SB never held me back at school; I went on to achieve top A Level grades, I was voted a senior prefect and I enjoyed popularity amongst my peers. School, for me, was a great period of my life.

SEN: What practical effects does SB have on your daily life and what kinds of constraints does it place upon you?

ES: Whilst I am able to live comfortably in “mainstream life”, it is certainly true that SB has day to day practical challenges which require a little forward planning and the ability to adapt to circumstances as they arise. In comparison to my more able-bodied peers, I can certainly see that SB negates spontaneity and encourages planning. Practically, I am unable to just hop onto a bus or walk into town; I have to plan my journeys to ensure that I have small distances to walk so I don’t tire too quickly, as well as thinking of access for wheelchairs or scooters if I choose to travel that way. In addition, at the back of my mind is the catheter question – will there be a clean toilet where I can catheterise or am I going to have to nip home early? By the end of the week I can see that I am far more tired and often require more rest time than my friends (and not just because I’m a student who likes to sleep).

SEN: What do you have to do to manage your SB?
ES: Fortunately, my SB seems pretty well managed. Thus far, I have had eight surgeries to correct orthopaedic issues arising as a result of SB, and I may well need more in the future depending on how well my body fares. I try to live my life in a way that minimises wear and tear on my body, but prefer not to sit around wrapped in cotton wool. If I want to do something, I’ll certainly give it a go, even if I’m exhausted by the end of it. As is often said, “all good things in moderation”.

The key thing is listening to my body and actually doing what it suggests once in a while. I take one lot of medication three times a day to help with bladder control and am reliant on clean intermittent catheterisation four or five times a day.

SEN: Do you think people behave differently towards you when you are in a wheelchair?
ES: The difference in behaviour towards a disabled person who is walking around and a disabled person in a wheelchair can be staggering. Many people do not know how to behave around people who seem different, and a wheelchair certainly is a symbol of being different. People will often stare openly, commenting to the person next to them. I personally feel most aware of my disability when I am out in my wheelchair, especially when people commit the classic “does she take sugar?” faux pas, addressing a question to the person with me rather than to me directly. This can certainly be frustrating, as it can be when people refuse to make eye contact.

On the other hand, there are people who couldn’t be more helpful and, once people get past their initial reservations, they are often happy to help. People are even more pleased when a wheelchair user engages them in conversation and proves that we are all, at the end of the day, the same.

SEN: Tell us about your recent trip to Uganda. How did it come about and what did you do there?
ES: After finishing sixth form, I decided that a break was needed before heading to University. I toyed with many different ideas of how I would spend this year but couldn’t make a decision – should I do an internship, work, travel or do all of the above? As I hadn’t applied for University in my upper sixth year, I knew that I would need to be in the country until January in order to attend interviews, so I decided that getting a job until then was the best idea. For six months I worked in a gift shop at home, where many of my friends also worked, and saved money for the second part of the year.

Around this time, the need for orthopaedic surgery arose, which further influenced my plans as I needed to be back in the country by the end of May in order to be fit and well for the new term in October. During sixth form I had considered the possibility of going to Africa to work with a charity with strong links to my church – we had been shown a video in youth group which showed the situation of people in Uganda following the rule of Idi Amin and the LRA, and the good work that charities were doing to help the local communities be self sufficient and get the best education possible.

There is, however, a huge difference between going to Africa in theory, and going to Africa in practice, and the reality was pretty scary! I think most people would find it a daunting proposition, but with my added set of challenges, people thought I was crazy (I certainly thought I’d lost a screw!).  But everything seemed to point in that direction and, before I knew it, tickets were booked and the experience of being a walking pin cushion for travel vaccinations began. What was even more amazing was that two of my friends from Church were considering going out too – one on a long term basis and another for a gap year adventure like myself – so the decision felt even more right.

In early February 2009, we flew out to work with JENGA, a non-governmental organisation working in one of the larger towns in Uganda which seeks to develop communities in both rural mountainous areas and big slum areas. Moving to Uganda for four months when you have SB is a real exercise in planning. I took three suitcases filled with catheters, pads, medication and all the clothes I would need (and then some) to see me safely through our time out there. I must have looked like a real prima donna as we swanned through Heathrow with things piled up on my wheelchair. But these things were important to ensure I had a safe and wonderful experience.

Along with the other gap year student, I committed to working in the Children’s Department, which sought to gain sponsorship for children between the ages of five and eighteen to attend school and gain qualifications. We also worked in the Kid’s Club Department which sets up children’s bible groups where kids can meet and play and receive good love and attention.

Going to Uganda was the most amazing experience and I think it is safe to say that I learnt far more than I was able to impart to others. But overall, one of the best opportunities I had was the chance to speak to families of children with SB and hydrocephalus. Unbeknown to me, Mbale, the town we were living and working in, happened to be the regional centre for treating children with SB and hydrocephalus in eastern Africa, through a charity called CURE. I had the privilege of regularly meeting with parents and children to offer support, answer questions and show them that even with SB you can live a full and fantastic life, doing all the things you’d hope to do, even if the way in which you do them is slightly more imaginative than most. Spending time with these families was an honour and made me very grateful for the NHS, support groups, our education system and my family. It also made me thankful for the steps our society seems to be taking to become more integrated and welcoming so that the so-called stigma of being disabled is (hopefully) becoming less apparent.

SEN: What are you doing currently and what are your plans for the future?
ES: At the moment I am a second year undergraduate student at University College London training as a speech and language therapist, and loving it. Including this year, I have three years until I complete my degree and am qualified to practise. I hope to work with children but until I have completed all my clinical placements, I will be keeping an open mind. Other than university, I hope to go back to Uganda, see more of the world and settle down and have a family.

SEN: What do you think are the most useful measures that the new Government could take to assist people with SB and people who use wheelchairs?
ES:
Whilst there is a lot of very promising talk about inclusion and integration, it would be useful if the new Government would put more weight behind their plans and, instead of having to modify existing arrangements, plan for a country that is diverse. Living in London and being a wheelchair user shows up just how behind we are in making our nation’s capital accessible, not only for those in wheelchairs but also to parents with children in pushchairs and the elderly and infirm. With the Olympics only two years away, it will be interesting to see what measures are taken to ensure that wheelchair users can get off and on the tube system safely and effectively, as well as tackling curbs and stairs found all over London. Working in consultation with wheelchair users would be of great use to the Government as a fresh and informed perspective would better guide their policies and plans and show up challenges that only a true wheelchair user can see.

Further information

For more information about spina bifida and hydrocephalus, visit:
www.shinecharity.org.uk

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