'Everything just seemed impossible and unmanageable' - Going on holiday with a disabled child
Going on holiday hasn't been possible for lots of us this year due to the coronavirus pandemic, but many disabled people have been struggling to go away for much longer than that.
We spoke to Jo van Berckel about some of the issues she faced when holidaying with son Kit, and how these difficulties led her and her husband to set up AbleStay; a charity dedicated to providing accessible, inclusive, family holiday properties in the UK.
Interview with Jo van Berckel – co-founder of AbleStay
When did you realise going on holiday was tricky?Kit has quadriplegic Cerebral palsy. In the very early days when Kit was young, we didn’t go on holiday as finances were tight, but also as Kit was a very unsettled baby/toddler and everything just felt easier being at home.
It wasn’t until Kit was about 5 when we realised the practicalities of going away/abroad were tricky now that Kit was a full-time wheelchair user, used a toilet chair, had a walker and comfy chair. This was far too much to pack into a typical family car. Everything just seemed impossible and unmanageable.
In 2015 I set up a Facebook group called ‘Accessible Holidays and Day Trips UK’ for exactly this reason. Many families do struggle to get away and hopefully, through my group, people are realising that with lots of planning it is possible. As a family, we are now seasoned travellers and, with lots of prior research, can make most things happen for Kit.
Now that Kit is 12 years old, we've totally embraced going away and feel we have masses of experience. We have meticulous packing lists (beach, skiing, day trips, football trips, adventure weekend etc.) and a huge Wheelchair Accessible Vehicle (WAV).
Our most successful trip to date was Disneyworld Orlando in 2019. From beginning to end, it was perfect. I found an accessible villa that had everything we needed and of course, Disney make the whole experience incredible and they couldn’t have been more helpful. I totally recommend this, at least once.
What obstacles did you face?The main obstacle facing disabled people is suitable places to stay, especially if you are a full-time wheelchair user and have complex needs like Kit. Kit requires a fully accessible bedroom (profiling bed with bumpers) and bathroom, ideally to include a changing table, hi/lo bath and space for a toilet chair. Additionally, a ceiling track hoisting is preferred. Very few places cater for this.
My husband Charles and I set up the charity AbleStay to provide disability focussed and fully adapted properties in London and other major cities. We are starting with a holiday home in London that will sleep 8 and include electric profiling bed, full ceiling track hoisting, changing table, hi/lo bath and adjacent carer accommodation (or room in the accessible bedroom for a spouse or carer/parent). The property is a bungalow and has ample off-street parking for WAV’s and is very close to an accessible train station to Waterloo and a local high street for restaurants. We hope to be launching the property Spring 2021, the demand is certainly out there and so we are very excited to be offering this.
I’m from London and now that Kit is 12 and much heavier, we are unable to visit our family in London due to a lack of suitable accommodation. This is so sad. We believe that everybody has the right to be able to visit London and its sights and from research, many people stay away when they have high access needs. We aim to change that and give EVERYBODY that opportunity.
What impact did all of this have on your family?My children were young and so they just accepted this as the norm. For my husband and I, there was certainly deep sadness that our lives weren’t ’normal’ and we couldn’t just effortlessly jump in the car and take our kids to the beach, or to a friend’s house for the weekend, or even jump on a plane for a long weekend. Our life with Kit takes great preparation and planning but we are good at this now. We wouldn’t change it for the world, and everything is possible.
- Accessible Travel Club (Facebook)
- Disability Horizons Tribe Facebook)
- Travelling with disabilities forum (Trip Advisor)
- Disabled access reviews (Euan's Guide)
- Martyn Sibley's blog
- Carrie-Ann Lightley's blog
- SimplyEmma's blog
- A Life On Wheels blog
- A Chronic Voice blog
- Chloe Tear's blog
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