Guest blogs
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Receiving too many notifications? Adjust your notification settings.

My own transport through life that allows me to travel

therollingexplorertherollingexplorer Member Posts: 3 Listener
edited September 2019 in Guest blogs

My name is Jessica Ping, I have a rare genetic disease known as Congenital Hemidysplasia with Ichthyosiform Erythroderma and Limb Defects, more commonly known as CHILD Syndrome. Only affecting 60 people worldwide, this condition causes skin, limb, and sometimes organ defects on one side of the body.

With my left arm and leg being less than half the length they should be, I am completely reliant on mobility devices to travel distances longer than a quick hop across a room. Because of the rough, red skin caused by my condition, wearing a prosthesis is uncomfortable at best. Therefore, in order to leave my house, I rely on a manual or electric wheelchair. Travelling around the world is never simple, but if you add in a physical impairment, there’ll be a few extra bumps in the road.

What are your thoughts on sandcastles?

When I was 10 years old and visiting my first beach they were all I could think about. I had come prepared with my own bucket and spade, ready to take on any challenge that may come my way. The first obstacle presented itself almost immediately after I jumped out of the car. My wheelchair is my mode of transport, but it refused to trudge through the sand, leaving me with two options:

  1. I could be carried by my father across to the water.
  2. I could hop with a stubborn might across to the water.

Choosing the latter option, I stumbled about 10 feet from my starting position, and collapsed into the warm sand, exhausted. My dad picked me up and carried me to an open spot near the water. 

The second, and final complication involved a lack of water in the area I was. So, once again, I took matters into my own hands and hopped across to the water. This time I made it, but the euphoria from my accomplishment did not last long. A huge, merciless wave came along and knocked my single foot right out from under my lopsided body, sending me sprawling for the wet-mushy sand. Disgruntled and a bit shocked, I sat up and looked around at the situation before me. Suddenly, it came to me. I called my dad over and made him lie down. I then spent the next 45 minutes covering every inch of his body with sand. The grainy mummified figure that sat before me upon completion was not a castle, but it was still pretty neat.

 

When you have a disability, you must be ready to adapt your lifestyle at any given moment. I was born with my condition, but I’ve still had to learn how to do things like type at an acceptable rate or workout without inducing injury to my body. If you add in trying to navigate an inaccessible world, your day-to-day life is going to be an adventure. 

God gifted me with the travel bug and I’ve always had a desire to see the world. I feel blessed because for the most part I haven’t had to say no to a lot of opportunities. My family and friends are always the first to lend a hand and my condition makes getting out of the wheelchair to hop a few steps fairly simple. That said, I get frustrated when I look at the world around me.

Many of the westernised nations I have visited over the last decade have specific regulations and sometimes even laws in place to ensure that people with varying levels of ability can get around. Most of the time, unfortunately, these guidelines represent the bare minimum of what arguably should be done. There are so many establishments around the world that have a singular step up into the shop, or a broken ramp on a bus.

They spend as little on accommodations as possible, but in doing so, they are promoting the idea that people with disabilities are lesser humans. This suggests we are not worthy of the same level of dignity and privilege as our able-bodied counterparts. 


Technology and policy regarding transport both have a long way to go. In order to see a difference in either, a significant attitude shift must first take place. In the meantime, we’ll just have to keep muscling our way into the priority seat of an overcrowded bus and spending a fortune on easily breakable mobility devices. We are used to adapting our lifestyles for the sake of everyone else’s comfort. Maybe one day, society will be too.

If you want to know more about my story, feel free to follow me on Instagram or my blog.

If you need information, try Scope's advice and support for travel and public transport.

What hurdles have you come across when travelling? How have these been resolved? Let us know in the comments below!

Replies

  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    I have a mobility scooter and my son uses a wheelchair. Whenever I take him out I observe people’s reactions quietly. This morning we were shopping and I again silently watched how others reacted to his wheelchair.

    Last Wednesday, we travelled with my son’s wheelchair on the bus to the library. Some folks were kind while others were rude. I have also noticed how some people are used to wheelchairs as they tend to behave a certain way towards me or my son. I appreciate that fully. 

    And yes I agree. We need a new mindset. This is 2019 after all, why must we act backwards? My son is not the only wheelchair user out there either. Even while we were on vacation, I still paid close attention to how he was treated as a wheelchair user. It was definitely a eye opener for sure. But we mostly enjoyed ourselves and had a great time overseas too. My son is not a robot, he deserves dignity and respect. 

    We should start a campaign or petition. This is why we must advocate for our disabled children. Good luck. Thank you for telling your story @therollingexplorer
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Playing devil's advocate........ why should the majority of people spend more money preparing things for a minority of people?

    Up until 2005 I was a healthy male father of 3 with a good job and good possibilities. Since then I have gradually lost more and more of my mobility until now I am officially housebound. I can go out with help but I don't get such hep, I can also go out by taking too much medication and suffering badly afterwards. I have only been abroad once since I became ill and had to take my son with me however, my mobility scooter was damaged by airport staff on the way home requiring repairs to one arm. I doubt the person who did it even gave a thought as to what problems it might cause because healthy working people have little or no concept of what problems disability causes. Ofc it could easily be covered on TV but the TV companies would much rather have programs about so-called "celebraties" or about Cancer which, after all, is the only really serious illness except maybe Dementia. I know this because that's ALL I EVER see on TV.

    My condition is rarer still than yours @therollingexplorer, in that there are no known cases anywhere else in this country or online anywhere in the world. I have searched for many hours trying to find something similar and failed. Consequently, as mine is an invisible condition I get little or no respect for my problems and especially none from the health and support services simply because no one knows how to deal with my condition and all are too frightened of making mistakes. Thus, any possible treatments are rarely discussed and never offered as options. Orthopedics are so bad now that they refuse to even talk to me any more. I have even been kicked out of an A&E bed and told to walk out of hospital even though my maximum walking distance is about 5 meters and any steps beyond that cause such suffering that I have repeatedly tried suicide as a solution to avoid the ensuing pain.

    If the professionals aren't prepared to help us why would anyone with no understanding of our problems?

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • therollingexplorertherollingexplorer Member Posts: 3 Listener
    @Topkitten

    Hi there,

    I am always up for a debate, but I do not think that the 48.9 million people in the United States alone should have to suffer based off of able-bodied ignorance. This issue goes hand in hand with other social political arguments around the world right now. Why should LGBTQ people have the right to be married? Because they are human and should be allowed to legally, spiritually, and wholeheartedly declare their love for another person. Why should women earn the same wages as their male counterparts? Because they work just as hard. Why should those facing physical, mental, and developmental challenges be able to get around and participate in regular life without hassle? Because we are humans that deserve the same opportunities as everyone else. 

    I am sorry to hear of your struggles and I do not envy your story in the slightest, but, I encourage you to use your voice to spread awareness of the misfortunes you've faced in your life. Most people are not going out of their way to ignore the disabled, they just are uneducated and need guidance. I hope that you can use your frustration to share your story. One person's understanding is still a huge success.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @therollingexplorer.... I thought that was what I was saying, that it is ignorance rather than anything else that leads to problems. However, steps into buildings and those around towns are there for historical reasons. Why should the people owning such places be forced to spend a lot of money catering for a minority? My comments are not about general ethics more about financial ones.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,664 Disability Gamechanger
    Thank you for sharing your views on this @Topkitten. It is a very valid point, and this is probably why we have not had significant progress. It is only through raising awareness that will allow for vital accessibility to be put into place. With disabled people being seen as equals. :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi, a very interesting post Jessica. You are an amazing, beautiful and intelligent young woman.
    I am 66 and have been disabled for 20 years. I spent the un-disabled years as an active, busy working wife and mum.

    Adapting to the `new` me has caused a truck load of stress and heartache to me and my family...plus friends.

    I have had oodles of help from the authorities and spent a lot of money adapting our home and making the best of things.

    I`m not a quiet woman...my nickname is Boudicca......I speak out as politely as possible, when I feel people and places could change to give everyone access to wherever they would like to go. Of course this isnt always possible, particularly with old buildings. But come on...if a historic house can put a ramp out for a wheelchair, then why cant a high street shop?

    We MUST continue to ask.fight to be treated equally.

    TOPKITTEN........I know we are a minority, but WE spend a shed load of our  money on items and services and to live our lives the best we can.

    I wont be going quietly.... cheers!
  • MeNextMeNext Member Posts: 1 Listener
    I used to be a very fit male, cycling the London to Brighton cycle ride in 4 hours on a mountain bike. Then cycle part way back again to rendezvous with my sister for a lift home.  I was at the doctors for a Hepatitis injection, as I had had pneumonia earlier in the year the nurse suggested that I have a flu jab as well.  The following day my joints ached, but I put that down to the flu jab as I had those symptoms from having it before. The following day I was paralyzed down one side.  Now I am on a regime of 24,000 pills a year, with a compromised immune system extreme tiredness and unable to do much as I also have extreme muscular & joint pain also.

    When I go on holiday it takes quite a bit of planning. I have to apply to some of the countries to be able to take my meds into. As I am on morphine and barbiturates. I have to ensure that the airplane has adequate power supply for my breathing machine and that I have wheelchair assistance through the airport and on/off the airplane. The worst place for airport assistance was, I am afraid to say, London Gatwick.  On one occasion I was taken from the aircraft by scissor lift then wheeled round to the airport entrance to find the door was locked. I was then 'parked' in the rain while they went to find a key. 30 minutes later, when I was soaked to the skin, they found a key. Yet no apology was offered. I wrote and complained only to be fobbed off with a pathetic response and intimating that I was lucky to receive assistance at all !!  Despite the fact that the EU and our government say that we are entitled to it and that it is to be free of charge.  I am pleased to say that facilities at Gatwick have now improved a little, but more needs to be done.

    So, although my disabilities my day to day life somewhat, I am still able to travel - thankfully. As travel is in my bones and there is so much for me still to see.

    I also agree with Pollyanna, there is still a lot to be done for the disabled. Recently I have visited several shopping centres to find that repair work is being carried out and that they have blocked off the disabled parking spaces - REALLY !!  Yet when you write and complain, you are told that you can use the other car parking spaces - if you can find one - but being disabled you need the extra width in order to enter/exit the car. 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,951 Scope community team
    Hi @MeNext and thanks for sharing your experience. Scope are currently campaigning for transport companies to make clear promises to disabled passengers about what they should be able to expect while travelling, as well as easy complaint mechanisms if something goes wrong. If you're at all interested in telling us what you'd like them to promise, you can do that here.
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
Sign in or join us to comment.