Talk to me about having a disability and navigating independence

[Independenceplease]

NC because I don’t want this to be outing.

I’m posting hoping for some MN wisdom and advice.

I have a life long physical disability(wheelchair user) and I’m an anxious person (CBT helped) I’m in my thirties and still live at home. I have a WFH job that I love and I’m studying for a masters. Until recently I’ve been happy with how my life is but I’ve been yearning for some independence. I tend to have these thoughts when I’m not busy.

Living with my parents means I often go along with what they want to do like today they don’t feel like going out so we’re staying in. Whereas being on annual leave I’d like to wake up and do what I fancied. I’d like children one day too but that’s another story.

I have a brother who I do things with but he’s got his wife and his own life. I have a couple of friends but they live around 5 hours away so meet ups have to be planned in advance.

If you have a disability how did you build your independence?

Do I need to employ a carer/PA, start driving lessons? I’ve not had support from occupational services since I was 18.

What works for you?

I became disabled in later life, so it's not the same scenario, but seeing others in similar situations to me, I think a lot of it is about approach and attitude. With a disability there are things you simply cannot do - or in my case do anymore. But what I see is people who see disability as lack of ability rather than adaptability. I cannot do some / many of the things that I did when I was younger (although there are many able-bodied who will never do any of them either, for all sorts of reasons), so I just have to accept that trekking the Gobi may be off the cards (although I don't know - quad bikes maybe?).... and that is exactly my point! You have to shift your perspective from thinking about what you can't do to how you do it.

I'd say one absolute - the first rule if independence is driving. Get out and get that licence!!! I'll also point out that scooters and motorised wheelchairs can go anywhere in the world these days on planes. They can get around the neighbourhood or the town too.

You are obviously intelligent - you can hold down a job and study for a postgraduate degree. That also says you can afford to do things - one of the biggest restrictions for many is not their disability but their lack of money. WFH may be very convenient as well, but if you WFH and also don't go out anywhere, you aren't likely to meet many people, and that will feed your anxiety - sociability and confidence are intertwined. So maybe thinking about doing something more sociable where you might meet others and form friendships may help all round.

I would suggest setting yourself some goals - not too many all at once, but say one or two. Don't go for the low hanging fruit either - set some challenges like getting your driving licence, going away for a weekend, or joining a club. Don't focus on how hard / impossible it will be, but on your strategies to do it. It doesn't matter if you don't succeed at first - test things out and if you fail, dust yourself off and find a better way of achieving it.

I can only walk very short distances - and it is slow going. But that hasn't, for example, stopped me exploring some really interesting Mexican pyramids, going whale watching, or tequila tasting in Mexico in January. It took me four hours to walk (with a rollator) up and down the Malecon in Puerto Vallarta (a total of two kms, which I was exceedingly proud of myself for doing!) - the fact that I had to stop at almost every jewellery shop on the way, more than a few restaurants, and a few other places is incidental! All that shopping was obviously a hardship....

You can be who you want to be. But you have to really want it. Because really wanting it is the first step in doing it.

My advice would be to learn to drive
Would you be eligible to lease a Motability car? That would be ideal as you could apply for any necessary adaptations to help you drive comfortably and safely.

Once you're mobile, the world can be your oyster; go to classes, visit accessible museums, join a hobby group etc.

If you receive funding to employ a PA, even better. You'd be out in the community, meeting different people. Maybe even going on dates!

I use a wheelchair part of the time and can't walk much, but having the adapted car to get out and about, even just to see a bit of countryside scenery, really helps my mental health. Otherwise, I get so sick of looking at the same walls; being inside the house all the time gets me down.

Sending very best wishes for the future. 😊

I'm disabled but mentally and I still live at home which is very embarrassing. I found by learning to drive gave me so much independence. I'm on my third year of driving and even though I can't afford to drive far at the moment, it's knowing I can just drive off when things get too much at home. Everyone said I wouldn't ever be able to talk, walk or live a normal life. The only thing that got in the way is my family saying I couldn't do it!!

Thank you so so much for your lovely replies. It’s so nice to feel like I can talk to you here and you just get it. It’s not something I feel able to talk about much in real life.

I think I could use part of my PIP alliance towards a motability car which would be good for independence.

It’s definitely a perspective thing I think over the years I’ve just got comfortable with a small world and obviously the pandemic didn’t help with that.

I wish there had been more emphasis on being independent when I was younger so I knew more what to do now.

Aside from driving what kind of things do you do independently? Aside from basic cleaning, cooking, working and studying I’d like to build more skills and feel like a (somewhat) independent woman!!

@Fuzzyhippo I’ve heard the same!! Great to hear that driving gives you a bit of freedom when it gets too much. It sounds like that may be my next step.

A absolutely understand that, as a kid I was never taught basic skills and it was when I hit 21-22 when I realised I wanted to have some independence. I found having pets, or even plants really helped me gain skills. I started with something relatively low maintenance like leaf insects or a small fish tank. It gave me some form of responsibility. Even working on a hobby, like art meant I could do commissions for people and making a bit of money. It's something I can do even when I'm having one of my bad days and is great for mental health

It’s really hard to say what skills
you may need to develop to live independently as we don’t know what life skills you already have and what you consider independent living to be.

Are you looking to live on your own and be wholly reliant on your own income (however you get it) or are you looking for more independence within your parents home?

If you are physically capable of driving with your disability I recommend learning, the freedom it afford is amazing and it can open up a whole new world to you. You can get specially adapted cars for people whose legs do not work well enough to press foot pedals so there are adjustments can be made. It’s harder if you have problems with arms or motor skills control. Although my physical disability doesn’t have me using a wheelchair (yet) driving has allowed me a freedom I never expected to have.

Do you need the assistance of a PA or carer? Consider the things you would require them to help you with and also consider whether any of these things are things you may be able to do yourself with some adaptation to your environment (eg cook with lowered work surfaces and hob/oven)

Have you considered dating? Would you need a PA to meet others? Children may not be out of the question in the longer term but obviously you’ll need a willing partner and supportive doctors (and sadly they’re not always as helpful as you’d want)

I firmly believe most disabled people can gain more independence if they so wish(and with lots of hard word sadly). There is financial support available and you may want to consider speaking to your local social work department to see how they can help support you. They’re usually also the one you’d talk to about direct payment assessments to employ a PA.

Good luck op. It’s quite exciting taking control and considering the possibilities. I won’t go all inspiration Porn on you as I’ve hated that growing up but there are ways around most hurdles and with compromise you can find your happy balance. Have fun considering the possibilities.

I would look into your options for hiring a PA. Dependent on your level of need. You can then with their help become less reliant any help your parents provide and become increasingly independent.
I would definitely learn to drive if you can. Or get a mobility car that your PA could drive you in.

Can I ask what your level of mobility is? Can you stand for example? If your parents were not there do you need someone available to you full time or would you be fairly self sufficient for a few hours etc?

Thus had given me food for thought. I think for now I’d like to work towards more independence while still living at home then work on living independently if possible.

It sounds silly but I’d love to be able to do things like go out and get myself a coffee or nip to the shop. So not huge things really. Just think what do I want to do? And then do it.
I got my (first!!) job in lockdown and I feel like that has helped me grow a lot and I have quite a lot of responsibility so it’s weird to feel professional at work but a still like a child at home. I never thought I would get my job so it’s quite exciting to think of what is possible in the future that doesn’t feel as doable now.

In terms of my mobility I can stand and walk with sticks in the house I’m fine to be left at home for the day it’s more leaving the house that I don’t do independently at the moment.

I’ve tried dating in the past meeting people from apps but it hadn’t gone further than a few dates. I’m not too bothered about dating for now though!

Thank you for giving me the space to chat.

Sorry about the typos!

This sounds absolutely achievable!

Break it down into small achievable steps. Do you have an electric wheelchair or a mobility scooter?

I would look for a personal assistant or enabler who would come and help you get out the house a few times a week. A good enabler will help you figure out the steps you need to take to become independent. Often confidence is the biggest barrier for people rather than their physical abilities.

Good luck!!!

I used to have an electric wheelchair years ago but it was quite big and I didn’t have much confidence in using it.

Absolutely I think a lot of it comes down to confidence for me!! But I need to push myself and start living life! Hopefully my comfort zone will expand.

Drive, drive, and drive!
It is my freedom, and my independence, and my equality all in one. (I've always been disabled but in wheelchair for the last couple of decades.)
When I'm behind the wheel I'm not only no different, but a lot of the time, more competent!
I'm a lot older than you, and I say work on that independence and develop an attitude problem now. Age isn't kind to anyone.

Dependant on income you may be entitled to some assistance via your council. What you employ that person to do is (within reason) up to you.

BTW I spotted a chap in a trike on a major road (London North Circular) the other day. Closer inspection he was in a motorized wheelchair that literally went up a ramp into the riding bay position to control his trike. There have always been custom trike builders but this was supplied as standard by these folk: www.google.com/search?q=Nippi+cars&client=firefox-b-d&channel=nrow5&sxsrf=ALiCzsbU-NL-hPZnRaEAo1pmWHNuEtUTiA%3A1654284881403&ei=UWKaYqWXGIaP8gKMigk&ved=0ahUKEwjlg9q1g5L4AhWGh1wKHQxFAgAQ4dUDCA0&uact=5&oq=Nippi+cars&gs_lcp=Cgdnd3Mtd2l6EAMyCAgAEIAEEMkDMgsILhCABBDHARCvAToHCAAQRxCwAzoGCAAQHhAHOggIABAeEAcQCjoFCAAQgARKBAhBGABKBAhGGABQ3wlYhg5g4DBoAXABeACAAVuIAfMBkgEBM5gBAKABAcgBCMABAQ&sclient=gws-wiz

Quite possibly not your style, but it made my heart sing to see a bloke in an electric wheelchair taking on the busy North circular alongside everyone else.

That’s so cool! I’m definitely going to look into driving. Excited now!! Freedom feels a little more possible tonight!

BTW 'confidence' for me, was born of nothing left to loose. I'm sure there are much better ways, but in the end I realized that if I didn't fight back and just do things even if they were horribly scary, my life was going to be whatever suited everyone else, not me.

Oh @Elleherd my life is going to be what suits everyone else rather than me. That is so true!! Absolutely sums up how I’m feeling.

I have severe physical disabilities - moved away from my parents a couple of times but it all kept deteriorating so I kept having to move back. I then got married (to a woman as it happens), and now my wife and I live with my parents, but we will shortly be moving for work (hers). It is objectively very hampering to have physical limitations, but I think you're doing the right thing to try to stretch yourself! I've travelled a lot in the past with my wheelchairs, it's definitely possible.

I would suggest that you talk to your council to see if there are funds available for direct care payments which means you can employ someone for a few hours a week or more to help you get out and support you. I have a friend who does this kind of work and it is possible but I don't know levels of funding or what is available. Also I would recommend joining something small locally, a Group or class, people are often willing to assist someone to come along. For example, my local library has a book club anyone can attend. Doesn't have to be a big commitment but it will help build confidence and you will meet people.

@Saracenia that is the type of care funding I receive! It's very helpful.