From Jonathan Griffiths:
Living alone is a highly individual matter, and a lot depends on the richness of your personality. It is possible to have a PA while you still live in the family home, or (theoretically) while in residential care, to enable you to develop an individuality. Then when you set up alone, you are not stranded, wondering what to do, maybe dependent on a PA with a richer life than you have. You must each have an independent life, your PA enabling yours, even supporting when things go wrong, but never feeling they should incorporate you into theirs, except when, rarely, it happens naturally.
It would be great if someone could really sort out the matter of sex help and PAs. While it isn’t a major issue, when it does come up it focuses strong feelings and fears and much confusion. Ideally you should have a friend to help you if needed, but that may not fit the circumstances; and a PA is involved with other intimate matters. The first tentative question for a friend or PA is: would they be comfortable helping? If they are, then with caution, privacy and tenderness, it need not be taboo. Caution would include discussion with a third party, to guard against abuse, and also an awareness that feelings may change with experience. Without a willing friend or PA, then assistance to access a sex-worker might be right.
Always, if you and a PA become mutually infatuated, then they must change their role to friend and partner and you find a new PA. But if you become infatuated one way with your PA, then discuss it. It will probably be obvious to them, and also (although it will be very uncomfortable for you) it may be brief. Maybe the two of you can work through it, knowing each other better afterwards, or maybe you part company. Sex experience for someone with a learning difficulty would need additional caution, but treated with equal respect.
Some Outsiders members join our club while they are still living with their parents or in an institution. Many decide enough is enough, and decide to live in their own accommodation, perhaps hiring PAs for the first time, to support them in running their lives. This move can be extremely exciting, but also terrifying; and Outsiders is here to support our members on this journey.
Help with the practical issues can be found from your local independent living agency, which can be found on the National Centre for Independent Living website: www.ncil.org.uk .Outsiders can help with more personal issues, such as:
When you hire a PA, it’s sensible to have a contract so that they understand precisely what is expected of them. They need to understand your privacy requirements, as well as what specific kinds of personal help you require. You may need them to help with toileting, but they must never help with your sexual needs unless you simply need help positioning a sex toy, putting a condom on, or positioning your body. Getting involved sexually is crossing the boundaries into abuse.
As well as signing a contract, it’s best to be honest about the kind of life you aspire to at home, so that you don’t hire somebody who will feel totally uncomfortable, or try to inhibit you. If you are gay, for example, there’s no point in hiring a homophobe.
Many disabled people find that one of their PAs tends to become the most suitable for social events compared to the others; and you can work out timetables to suit — although they may not be happy always being the one to work on Saturday nights.
PAs tend to be young and gorgeous, and can be quite a distraction for people you are hoping to date. Tell the PA to go away and leave you alone. It’s best if you have a nice spare room for them to relax in when these situations arise.
Spending a lot of time with your PAs can lead to them getting on your nerves. You might get a crush on one of them. Ocassionally, like in any other place of work, love blossoms. If any of these things happen, it’s best to end the contract because continuing to work with them might very easily become very messy. Keep all PAs on a professional basis.
Making real friendships is always risky, precarious and can be quite unpredictable. It’s useful to be aware of the fact that there are many different kinds of friendship, which people tend to fall into quite naturally. For example, some don’t mind being useful, while others are fun to go out with. Some are totally unreliable but have other qualities you enjoy and others may be great because they know loads of people and provide a wide social network. It’s fine to like people for one side of them as well as trying to avoid another side. The important thing is that you provide as much input into your friendship as they do. So treat your friends respectfully and be generous with them. If you are unreliable, perhaps because you have fatigue and cannot always do what you planned, make sure you explain that in advance, and try to let them know if you can no longer make it to an appointment. If you don’t have much money, be sure to make something — or do something — instead of buying them a birthday present.
There will be times when you feel lonely. If it gets really bad, like getting panic attacks, tell a friend that this happens sometimes, and ask whether they would mind if you phoned them. Fill your diary with things you want to do, and don’t become isolated. Join Outsiders and you never feel lonely again!
The best way to enjoy the single lifestyle is to surround yourself with lots of single people. As soon as one friend finds a partner, find another who is single. Be open about your dating needs, instead of secret. Have a laugh about your disastrous dates, with people who understand. Married friends with babies tend to want to talk about nappies, or just want you as a baby sitter, which is OK one day a month but not more. Families are OK but they want to talk about family gossip, rather than what your latest is like in bed. Don’t let them cramp your style.
It’s good if you have lots of single disabled friends. That way, you can share tips and support each other when needs be. Outsiders is good for that.
Going out to meet people is sometimes difficult for people with disabilities, especially if you are visually impaired and cannot make eye contact. Extroverts fair better than introverts, and people with pretty faces do best of all. Pubs are usually not good places, for some reason.
Special interest clubs are much easier, and it is best to choose one which will have a selection of the kind of single people you want to meet. For example, a photography group might have plenty of men and few women, whereas a dancing group, or a group interested in historic buildings, will have plenty of women.
Fetish clubs have always traditionally been welcoming to disabled people. Gay people probably have a far more difficult time than straight, as the gay culture tends to be much more “lookist”. Bisexual groups, on the other hand are more welcoming. These generalizations tell us that people who already feel stigmatized (fetishists and bisexuals) are more welcoming to disabled people than those who do not.