Disabled parenting - moving from England to Spain
Sarah Allen, a disabled mother living in Catalonia, Spain, talks about her experience of moving from England and compares cultural attitudes towards family life and disability.
Leap of faith
Leaving Britain to go and live in Spain was a big leap of faith for all of us. I had driven my car, leased under the government Motability scheme, for 11 years. I loved driving and being in control – taking the children out, doing the school runs and so on. I had received direct payments since 1996 and employed my own personal assistants (PAs) very successfully for 18 months.
To be honest, I think that having such a comprehensive and successful care package with wonderful PAs added to my confidence and the feeling of “Yes, I can do this!” I had begun to take some aspects of my independence for granted, when we decided to go to live in Spain.
I had to be sure that I could still have full roles as mother and wife – I’d spent years in Britain setting this up. Independence, empowerment and the promotion of individual rights were the by-words of the world I was leaving. I had come through a lot of learning about what I needed and what I could expect from social services, both as a disabled adult and then as a disabled parent. I wasn’t prepared for starting again here in our little town in Spain, re-addressing traditional perceptions of disability and parenthood.
We moved to Mora d’Ebre in Catalonia in 2004. At first, I attracted lots of surprised looks as I wheeled around with our three children and it soon became apparent that disability was not common in our small town. However, the people warmed to us and our attempts to integrate and soon they knew me and my family and stopped looking at the wheelchair.
Of all the things I had been prepared to compromise on, driving was not one of them, but the lack of a Motability scheme, coupled with expensive automatic cars and hand controls meant an adapted car was out of the question. This threw me, but the warmth of the Catalan people, the beauty of the mountains and the fact that the whole family had settled so well helped to steel my resolution!
New family freedom
Ironically, our freedom as a family unit is better in Spain because of the good weather and outdoor life here. We have so much more room to socialise and roam and children are accepted everywhere. Sadly, there is only one bar with a disabled toilet in Mora, but itis the one with a children’s play area! Fiestas, fairs and carnivals are all outdoor affairs using closed roads. This is great for wheelchair users, making integration easy, especially when children are involved.
The school offered very good language support for the children until they picked up enough to be independent. The school has never discriminated against me or the children in any way, always offering to hold meetings downstairs.
It’s not been easy – living with disability never is. Not having the language to communicate properly with PAs is tricky, but dictionaries are great things! Learning the language is both frustrating and satisfying. The more I learn the more independent I feel. There is no greater sense of satisfaction than feeling understood! My husband is a translator and speaks fluent Spanish. Without that we could never have got round some of the bureaucratic systems which are particular to Spain.
Overcoming red tape
Due to the size of Mora, the social workers have no experience of applying for help with a lot of standard things, let alone dealing with a disabled parent. They have systems for disabled people, they have systems for children, but creating a care package which not only dealt with me but had to support me as a mother was alien to the social workers.
Despite this, the social workers thought laterally, using both the adult disability fund and the children’s fund to access financial help for school clubs and staying for lunch at school. They even provided me with interim home care through the children’s budget as I waited for my care money to come through, arguing that help for me was in the children’s interest too.
In order to access Spain’s social services system, I had to become ‘resident’, which involved lots of red tape. It took two years to get a care allowance. Every time you apply for help with buying a car or stairlift or adaptations of any kind, you have to pay out of your own money and then wait for one to two years while your application is processed. Only then are you reimbursed a percentage of your total expenditure. This is unbelievably hard for a socio-economic group which is generally less well off anyway. But there are new laws coming out all the time and things are changing and improving, albeit slowly.
What I have seen here is the pulling together of families to protect a vulnerable member. Traditionally, the large extended family unit is very strong in Spain and families tend to be self-sufficient and private. Families are expected to support individuals with disabilities – financially, emotionally, physically and socially – without much support themselves.
This is great for everyone involved where it works. However, breakdown of family and migration is starting to happen here, and the laws are beginning to reflect the need not to take a family network for granted and, importantly, to recognise the individual’s choice to go outside the family for support or help. It must affect the dynamics of parenthood when your chief care-giver is your mother-in-law!
Disabled people here agree – people with disabilities need support to be as independent as possible in the midst of their family, and carers need to guard their independence too. Some traditions, no matter how ingrained, have to move on.