Friedreich's ataxia and me

As my parents are unable to drive a car, and I decided not to try out learning to drive myself, I am totally dependent on public transport. It has always amazed me how so many disabled people I meet seem to think public transport is a no no. So much has changed in the past ten years and as a wheelchair user I am able to roll on and off trains and buses as freely as I want and need...

Many years ago low floor buses with ramps were introduced to the West Midlands and now they are used on every route. On the buses in my area, the ramps are located at to the front of the bus adjacent to the driver’s cabin. They are operated manually by the driver, so that he or she has to get out of their seat and pull the ramp out from the floor of the bus (it lies flat and hidden against the floor of the bus when not in use).

You then wheel up the ramp, proceed a few feet down the bus and plonk yourself in the dedicated wheelchair area which has a tall soft headrest for you to park against. This stops your wheelchair from tipping backwards when the bus comes to a stop. It is always best to tell the driver where you intend to get off so that they can park up correctly next to a kerb and jump out of their cabin to lower the ramp.

I use buses to get to the clubs/bars/restaurants, shopping centres, railway stations, local theatres and much more. They are the crux of my social freedom!

London buses are a little different in design. The wheelchair ramp is located in the middle of the vehicle. I have always found this a little inconvenient as it means I cannot communicate to the driver. However there is a button in the wheelchair area which you can press to ring a bell and alert the driver that you have reached your destination and need the ramp lowering so that you can alight the bus. The second difference is that the ramps are operated electronically so instead of the driver having to get out of his cabin and pull out the ramp himself, he just presses a little button to engage the ramp.

My Rainshader is great for when I'm waiting around for public transport in the rain. It's not specifically made for wheelchair users but it fits over my chair really well.

When getting on and off trains, a portable ramp is used to bridge the gap between the floor of the train and the platform edge which gives a smooth ride up or down. These portable ramps are stored on the majority of stations. Station staff are responsible for laying the ramps correctly, so do as I do and leave it all to them!

Disabled passengers are required to book assistance over the phone about three days in advance of travel. Who you need to call depends on the train company that serves your area. My city's railway station is ran by Virgin so I would call Virgin Journey Care. Booking assistance entails telling the train company your itinerary so that staff are ready and waiting with the ramp when you depart and on arrival.

I have a Disabled Person’s Railcard. The Railcard allows you - and an adult companion with you - to get a 1/3 off most Standard and First Class fares throughout Great Britain.

My National Concessionary Travel Pass entitles me to free local bus travel anywhere in England after 9:30am until 11pm weekdays and all day on Saturdays, Sundays and bank holidays. The same concessions may apply to local rail, trams, Metro services and Ring and ride/dial a ride (check with local authorities for details).

Anyone who has a disability which has a substantial and long-term adverse effect on his ability to walk is eligible. However specific requirements differ depending on what your local authority demands. I had to provide a copy of my DLA certificate when applying for mine. Eligible residents should contact their local authority for more details and an application form. Many authorities have information on their websites.

In 2017 I went to the Ataxia UK Conference in Stanstead on a National Express coach. Many coaches and stops are wheelchair friendly. National Express recommend that wheelchair users contact them on 03717 818181 at least 36 hours in advance of travel. See http://www.nationalexpress.com/Assets/uploads/pdf/disabled_code_practice.pdf for more.

This website has been around sinse 1998, and although it's changed a lot over the years it's always been about me and my disability. Over the years I have used many different hosts and website design packages. For the past ten years or so I have used 1&1 as my host and I have always been very happy with it. I have always wanted to learn how to build a website from scratch using Adobe Dreamweaver, so about three years ago I got in touch with Polar Solutions and arranged for a trainer to come out to my home to teach me at my own pace. So I now design this website using Adobe Dreamweaver and the skills I learned on that course.