'Everything just seemed impossible and unmanageable' - Going on holiday with a disabled child

Tori_Scope

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.

Other resources

For more information on accessible holidaying, visit Scope’s page on planning accessible holidays abroad, which covers a wide range of topics from choosing a destination to planning sightseeing.  

These websites also offer general advice:

• 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 

Here are some accessible holiday companies:

• Limitless Travel
• Enable Holidays
• TravelEyes
• Disabled Holidays

Do you have any experience of accessible or inaccessible holidays? How do you find going on holiday as a disabled person, or as a parent of a disabled child? Do you have any tips to share? Do you have any plans tripped for 2021 or beyond? 

Ross_Alumni

An important topic, and a great interview. Not enough holidays are accessible, and the level of awareness amongst the big travel agencies is very low.

Tori_Scope

It definitely doesn't seem as though there's much awareness from the big travel agencies, I agree Ross! And even when accessible options are offered, it's often at great expense to the customer.

WestHam06

Hi @Tori_Scope, 
                            Thank you so much for sharing this and what a great interview. The awareness amongst big travel agencies as to the individual needs disabled people have is poor and there aren't that many accessible holiday options out there in my experience. This sounds as though it is a great charity and very much needed, which in a way is sad. As was stated in the interview, everyone has a right to visit places and stay in accommodation which meets their needs. Thank you.

Tori_Scope

I'm glad you enjoyed reading it @WestHam06 Yes, hopefully they'll be able to expand and offer some more accessible properties across the UK, and other travel agencies will follow suit. 

MarkGibbons1

Me and my girlfriend have been on good accessible holidays in zante the hotel we always stay has excellent access my fiancee has cerebral palsy and uses a chair has can't walk to far and have mobility problems. The hotel we stay has lifts and you have to get to the bar and restaurant, you have to walk out of reception and go round the back and go through the patio doors at the back which are level and that's how you get to the bar and restaurant. 
Every year the say their going to put a ramp in where the steps in reception were the steps are to get to the bar area so hopefully when we go back has not been for a while it will be done. All the restaurants in the town are all accessible and extremely helpful.

amj86

I'm an independent  travel agent for hays travel. I have a sister who has quadriplegic  cerebral palsy and travel  all over the world with her. If anyone would like any help booking a suitable  holiday  please  feel free to message me more than  willing to help. [removed by moderator - email address]

Tori_Scope

Hi @amj86 Thanks for sharing your experience. Unfortunately, we don't allow personal email addresses to be posted on the community, or any advertising, so I've removed your email address. 

Tori_Scope

That sounds great @MarkGibbons1! Hopefully they'll install a ramp soon too. 

amj86

no worries thanks