The Issues That Matter to Me Most as a Young Disabled Person

Published Date
01/11/2010

 My Story

Hi! I am Jonathan. I am 24 and have Duchene Muscular Dystrophy (DMD). I would like to speak to you about my successes as a disabled undergraduate and graduate student reading Theology and Religious Studies at St John’s College in the University of Cambridge. I can sum up my successes at University in terms of my Seven A’s:

ACHIEVEMENT (1)

I am currently doing a PhD. in Jewish Philosophy at St John’s College in the University of Cambridge. I got first class honours in my B.A. degree in Theology, and a high first in my Master of Philosophy (M.Phil) on Jewish ideas of the Messiah. I am a Cambridge Nowell Rostrum Scholar and have been awarded the Faculty of Divinity’s Theological Studies Prize for two consecutive years running. For my efforts as a disabled Christian involved in building bridges between Jewish and Christian students in the University, I was awarded the University Student Union Award for Promoting Understanding. More recently, I was named as the Muscular Dystrophy Campaign’s Young Person of the Year. For this I am very grateful and consider it be a great honour. All of these achievements, and believe me I don’t like to boast about things, were attained despite having a mobility limiting physical disability. My achievements have been made possible by the following six A’s.

ATTITUDE (2)

I haven’t got a chip on my shoulder. Just because I am disabled it doesn’t mean that I have to feel bitter or angry. I have a positive attitude about my disability and don’t let it get in my way or bring me down. I focus on what I can rather than what I can’t do. I focus on the Ability not the Dis- in Disability. I am not defined by my disability and should not be. I don’t feel sorry for myself and I don’t want people to feel that they have to be sorry for me. I feel sorry for people when they feel they have to feel sorry for me!!! I join in ‘ablebodied’ activities and until now had some reluctance about joining groups specifically targeting disabled people. However Trailblazers is an exception as it shares my ethos about ability not disability and is constructive, articulate and well thought through. This is why I joined Trailblazers.

ASPIRATION (3)

I have a career path in mind—I want to be a University lecture in Jewish Studies—and I have always expected to achieve my best in all areas. I always aim to do the best I can and keep focused on the principal that I have as much right to do well in life as ‘ablebodied people.’

APPLICATION (4)

I work very hard and always try to apply myself fully.  I don’t expect to be treated differently because of my disability and don’t want to be treated differently. With my family I think about ways around a problem rather than giving up because of it. Giving up is no option for me.  

AWARENESS (5)

I rely on the good awareness of other people for the things that I need to help me achieve my goals. This is dependant on good communication and open dialogue. For example, my College (St. John’s) have been brilliant in providing accessible accommodation and have made changes for me as my condition has changed (such as an electric light switch on my desk/ ceiling hoists/ door opener operated by a key thob/ wooden floors). They also give regular updates to the Senior Tutor’s team in College so that everybody knows how best to support me. Of course, this varies considerably between colleges. On this point, I can only speak for my own College.

ACCESS (6)

Access in every sense of the word. I give two examples. First, there needs to be good physical access to buildings places of education. I have experienced good and bad access. My College at Cambridge has put a lot of time and effort into improving wheelchair access in order to allow people like myself to come to study. Some of the others I have visited are yet to follow or are working on it. I have come across a number of modern buildings in the University and elsewhere, which don’t have good physical access or else are badly designed. These require more work. Perhaps this is another project for Trailblazers and other groups.

Second, there needs to be good access to educational opportunities with adequate support (e.g Discreet LSA support at school, note takers at University. I speak as someone who has experienced both the good as well as the bad and the ugly.

ANGELA (7)

A nagging mother who encourages me to aspire high and achieve…everybody needs one!!!

All of these A’s were and are necessary for a disabled person like myself to get to where I am now. I hope what I have said is helpful.

Areas that Trailblazers Could Focus on

I have come up with several suggestions for areas on which Trailblazers could focus in future campaigns.

1.)    Setting up a national scheme for hiring equipment, such as hoists, toilet chairs, wheelchairs , mattress, accessible vehicles etc, as a series of hire packages when you visit another area so you don’t need to provide your own. This will allow disabled people to travel more often and more freely.  

2.)    Better disabled facilities in restaurants and pubs. For example, provide a ‘Rise and fall table’ in restaurants, adequate space between tables for wheelchairs so that they don’t block passageways and walkways.

3.)    Electric Wheelchair Friendly Taxis. The local council and taxi firms could provide taxis with enough head room for adults travelling in electric wheelchairs. 

4.)    Wheelchair Friendly Air travel. There could be greater secure storage and better insurance for equipment and wheelchairs on flights especially electric wheelchairs. Another possibility is asking for space on aircraft to allow clamping of wheelchairs and passengers instead of having to transfer into a seat. 

5.)    Wheelchair Friendly Coach travel. For example National Express. There could be more opportunity for people in wheelchairs to travel on coaches. Companies could install more ramps, lifts and places to clamp wheelchairs in place of a seat to make it possible for those who can’t transfer into a seat. 

6.)    Train Travel. I think that people should be able to travel by train without having to always ring up/book online. I have heard of electric ramps being installed on trains. This could be worth pursuing.

7.)    Hotel chains (For example Travelodge and Premier Inn). I feel that there could be better awareness of needs of disabled. In disabled rooms, beds could me made to be high enough off the floor to allow a hoist to fit under. A ceiling hoist could be provided in disabled access rooms. Wet room ‘wheel in’ showers could be provided in all  disabled rooms

8.)    Shops. More ramps could be installed and more room could be left between racks of clothes and aisles in shops to enable better wheelchair access.

I would like to say thank you to Trailblazers for inviting me to speak at today’s meeting (which was moved to Cambridge so I could attend) and thank you for listening to part of my story.   

Jonathan Gilmour, St. John’s College, University of Cambridge.

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