Laughter is the shortest distance between two people. -- Victor Borge
Sit down with them for a chat. Work out things that would make it easier for you to meet people your own age. Explain how you need your privacy when they visit. Ask that one of the downstairs rooms becomes your lounge, and insist that they accept you having whomever you want stay the night with you.
Why do you still live with your parents? If your social life is such a washout, isn't it time to at least consider getting a place of your own?
If your parents love you, they'll want you to become a mature, independent adult; and if they don't, that's even more reason to leave home! People who never break out into the big wide world never really grow up, and don't come across as fanciable; at best, you may find someone who wants to mother or 'protect' you.
The longer you stay at home, the more daunting it will seem to make your own way in the world, but it's worth all the hassle in the end. Remember that the sharpest regrets are always for what you didn't do: do you want to be still living at home in your 50s, caring for a demanding parent and tormented every day by the vision of the happy, independent life that you allowed to pass you by?
Depending on your parents' attitude, there are two ways to leave home. If they're supportive, you could get a flat nearby and pop in to see them regularly. Local councils and housing associations are usually the best bet for safe, cheap accommodation. If your parents give you the 'how could you do this to us' routine, it's better to make a clean break and apply for a job or a course in another area. Go off to college where you are bound to meet other single people.
If you don't fancy living on your own, find a flatmate or house-share through the accommodation columns in the local paper, or advertise in our magazine INSIDE for another member of Outsiders to share with you. Or see if living in a commune might suit you - they're not all run by weird religious sects.
Home is not where you live but where they understand you. -- Christian Morgenstern
If you don't move away, you may end up feeling unfulfilled and frustrated - so a brief lonely spell while you're striking out on your own might be worth it. You have to decide what you want from life - freedom and risk, or security and restriction. Put more poetically, would you rather be a protected, well-fed bird in a cage or a free-flying one fending for itself?
The loneliness you fear may actually turn out to be soothing solitude, especially if you've spent most of your life cheek-by-jowl with people you didn't care for in institutions.
You won't know whether living away from home or institution suits you unless you try it. If it doesn't work, you can always go back. You can feel proud of yourself for having had the courage to try. Life is full of possibilities, and the worst thing is to grow old never knowing what you're really capable of.
If you might be lonely living alone, why not get a lodger? Animals make great company and perhaps a pet would suit you? Maybe you need to be surrounded by lots of people, in which case seek sheltered housing, flat sharing or community housing. If you can't hack it on your own, you can always go back.
If you have mental health problems or simply aren't confident about coping on your own, many large housing associations run 'halfway house' schemes whereby you can live in supervised hostel accommodation for a couple of years while you learn how to live independently. This can involve you being sent 'pretend' bills by your housing worker so that you learn how to budget in the 'real' world. When you feel you're ready to move on, you move into another flat run by the housing association and live independently.
People with learning disabilities might like to read the book Leaving Home, Moving On which is free from the Foundation for People with Learning Disabilities - call 020 7535 7420 or www.mhf.org.uk.
Our library book no. 297, 'The Chosen Child Syndrome - What To Do When A Parent's Love Rules Your Life', could help you make up your own mind and deal with the situation.
There is no duty we so much underrate as the duty of being happy. -- Robert Louis Stevenson
You need to find a balance between your duty to your parent and your right to a life of your own. Don't see it as an 'Either/Or' choice - the happier you are, the more caring you'll feel, and the freer you'll be of the resentment and frustration which might otherwise sour your relationship with Mum or Dad. Therefore, you owe it to them to make some friends and have a good time now and then, even if they find it hard to adjust to your new lifestyle for a while. If they love you, they'll want you to become a happy, mature and independent person; and if they don't, why waste your time on someone who's trying to make you miserable for their own selfish ends?
Guilt may also creep in from two different angles unless you can balance pleasure and responsibility.
If you can't find another family member or neighbour to share your caring duties, ask your local Social Services if they can provide respite care. Look in our directory under Carers to get some support.
By all means treasure your Mum or Dad while you still have them, but live with one eye on the future. Create a life that you can build on and enjoy when they're gone. Make it clear that at least one day and one night each week is your special time, when you'll go out. Your parent may actually welcome the idea of being on their own for a little while, if they know that it's only for a few hours. If they can't be left at all (if they have Alzheimer's, for instance), at least join some penpal groups to broaden your horizons and make sure that someone comes in to relieve you so you can go out.
One half of the world cannot understand the pleasures of the other. -- Jane Austen
It's your life and you have the right to do as you please. Other people have no right to impose their views on you.
On the other hand, life is difficult enough without going out of your way to aggravate those around you.
Try to understand why they object, is it because:
We don't consider any of these reasons valid, but what do you think? Does Mother/Matron really want to ruin your life or cramp your style, or are they just lazy and thoughtless?
It's always sad for us at Outsiders to see someone give up their friends and their chance to make a better life for themselves, but there's nothing we can do. You have to make your own decision. But don't let anyone tell you that they know what's best for you - only you do.
Remember privacy has been declared an absolute human right in the European Convention of Human Rights.
Talk to others who are in the same position, others who've moved out of your situation, and others who've stayed in it. Talk to people who've established their freedom within the home by insisting on being given it, and winning their battle. Look at the alternatives and compare their advantages and disadvantages - write these down in two columns and then decide whether they're worth pursuing. Read the library books 'Pulling Your Own Strings' (no 174) and 'Families And How To Survive Them' (177).
If you're disabled, you may like the idea of moving into sheltered housing.
The National Federation of Housing Associations
can provide a list of housing associations in your area on:
Fax: 020 7067 1011,
Email: info@housing.org.uk.
The Habinteg Housing Association
builds integrated housing estates with 25% of homes designed for wheelchair users. Contact:
Holyer House,
20-21 Red Lion Court,
London.
EC4A 3EB.
Tel: 020 7822 8700.
Fax: 020 7822 8701.
Email: info@habinteg.org.uk.
See also Housing
in our directory.
Even if you decide to stay put and not rock the boat, you needn't retreat totally into the world that your carers have created for you. You can keep some of the friends you've made, even those your parents regard as 'unsuitable' (i.e., fun) - seeing them in secret may add a pleasant feeling of rebellion. You could become a dormant member of Outsiders - we could remove your name from thepublished list and just pass on your details to a few suitable people now and then. Anything is possible. But please don't just go into a shell, because we'll worry about you!
Until you've lost your reputation, you never realise what a burden it was or what freedom really is. -- Margaret Mitchell
It's easy for us to say, but - who cares? The people who like you would be delighted to think that you're taking steps to make your life happier. And if they enjoy a bit of gossip in the meantime, surely you're big enough to let them have their fun?
If you're really worried about the neighbours and the local grapevine, provide a 'respectable' cover for yourself. Spread a rumour that you've advertised for a gardener/cook/chess partner or whatever. The 'visitors' are simply applying for the post. Beat them at their own game!
Alternatively, meet potential partners somewhere else. If you're a 'regular' at the local cafe or pub, get the staff to treat you like a VIP while you're entertaining your would-be friends so that they're impressed by your local standing. Even if the encounters don't work out, at least you'll have something to talk about the next time you pop in for a drink!
Our library book no.82, 'Your Erroneous Zones', could help you become less worried about what others think and start enjoying your life.
Being institutionalised numbs most people's brains, so it's essential to get out and meet people outside the home.
That way all the pettiness of the staff and residents will fade away, at least for a few hours, and you can establish your identity with people you have chosen as friends.
Join a local group or society and use your Mobility Allowance to go along to it. Advertise in the local paper to make friends who'll visit you, and join a few penpal groups, and use the Internet to make contacts. Organise mutual exchanges with other institutions, for sports contests, dances or holidays.
Use Outsiders to contact people with transport who'll be able to take you out, and make full use of each outing to meet others who may be more compatible. Be ruthless in your search for a more fulfilling life. Your family and the staff of the institution may well prefer things to go on as they are, and 'being awkward' may have to be your route to happiness.
You could leave the institution? You may have grown used to having lots of people around you and might not welcome the isolation of living alone, or you might relish the idea. Be prepared to try things out to see how they go.
Nowadays, you don't have to accept imposed care packages, nor institutionalised care: you can live the life of your choice by employing a team of PAs.
Just in case you are not familiar with these schemes, here is a little information about direct payment schemes and ILS.
Once you've established through your social worker or local disability association/Centre for Integrated Living whether or not a scheme is running in your area, you can ask to be assessed for that scheme. This part is not always easy: it varies from council to council. It is simpler if a scheme is already in existence with disabled people there to seek advice from.
The schemes usually work by the council (eventually) making a cash allowance to the disabled client, after a process of assessment which is often long and laborious. This cash is complemented in some cases by money from the government in the shape of the National Independent Living Fund; to qualify for this, your council must already be giving you £200 a week in funding (or services), and you must be in receipt of the care component of DLA.
The criteria and rules vary from council to council, so it's better to investigate these locally and preferably with advocacy from disabled people already using available schemes. Depending on the way your local scheme is run, there will also be a certain level of responsibility involved; in general you will have to be an employer responsible for all your workers' tax and National Insurance contributions, holiday and sick pay, etc, and legal obligations about workers' conditions. There is usually support for this, often a payroll worker to give you help with the paperwork while keeping full control of how and when you receive support. There is sometimes training given to help you gain the confidence to be an employer. Councils also vary in how accepting they are of ILS, and the fight for their right to implement one fully means that you have to be determined.
This is much better than Social Services-supplied agency workers who come along and give assistance, without the bother and responsibility of anything else. However, agency 'carers' cannot usually provide the freedom and flexibility of a Personal Assistant, and they are often inclined to be 'caring' in a sense that is suffocating and patronising. Agency workers don't usually party with you into the small hours; or clear up your house after passionate love-making! They rarely offer escorting or driving services. They are often constrained by agency rules - and, of course, you don't normally have even minimal control on the basics of when you eat, when you sleep, when you have fun!
See Disability & Independent Living in our directory.
You select your own team of PAs, just as any other employer selects their staff. Your job description can specify your personal tastes and requirements, to ensure you become free to live as you choose.
Make a list of the ways you are currently being restricted and another list of the freedoms you dream of having. Include these lists as politely as possible in your PA's job description.
Decide what sort of PA you really want. Gender might be an important issue as they will be involved with your intimate parts. They need to match your codes of morality and preferred hours of sleep/wakefulness, smoking and drinking and whether they would be bored or stimulated by your lifestyle. Don't choose PAs for their attractiveness - far better to have a team who work well and encourage you in your love life elsewhere. Having said that, it's sods law that all the cute and lovely people in the world decide to take jobs as PAs and this can pose a problem for you. How can you successfully chat someone up when this beautiful specimen of a human being is by your side distracting your friend's attention? Be warned: seek high and low for a PA who isn't dropdead gorgeous.