The barriers of socialising as a disabled person

ableemily

My name is Emily, I’m a 24-year-old blogger and disability campaigner from the North East of England. I use a wheelchair and you’ll often find me tweeting about #accessfails! I’m passionate about the barriers that many disabled people face in their daily lives and how we can work together to break them down.

Like many others, I use Twitter as a way of connecting with other disabled people. I recently participated in a thread relating to the difficulties that many disabled people face when it comes to socialising and meeting new people. I was really struck by some of the comments describing the impact that these barriers can have. One person even said that they hadn’t left their own postcode for over a year as they felt unable to cope with the barrage of barriers that visiting unfamiliar places presented to them.

According to research by the Jo Cox Commission on Loneliness, over half of disabled people report that they feel lonely. Reflecting on my own experiences, and reading about the experiences of others online, I find myself to be sadly unsurprised by this statistic. It got me thinking, as this year marks a decade since the Equality Act (2010), why is it that disabled people are still confronted with so many barriers to socialise with others?

Access anxiety

I’ve suffered with generalized anxiety for a long time, but when I became disabled, a new kind of anxiety started to appear in my life; I like to call it Access Anxiety. The snazzy name refers to the high levels of anxiety I often experience when I want to go out and socialise, but fear what accessibility issues I may encounter on the way there and when I arrive. These issues could involve anything from inaccessibility of public transport, to visiting somewhere new and discovering there’s a set of stairs up to the entrance which they failed to mention on their website.

These problems can be significantly intensified when you’re meeting somebody new – whether that’s a friend, a date or even a potential employer. Fortunately, my close friends are now familiar with the places that do work for me and which won’t. However, when I’m meeting somebody new, I have a choice to make. Do I risk freaking them out by going into the full detail of where I can and can’t meet, or do I just hope they choose somewhere suitable? Or do I just avoid the situation altogether? Sometimes I find it too exhausting to deal with Access Anxiety and having to explain why I can’t meet new people at certain places or do certain things. I often find it easier to just deal with the FOMO and stay home with my most reliable friend (…Netflix).

Society’s perception of disabled people

Access Anxiety is not the only thing I have to worry about when it comes to meeting somebody new. Whilst we have come a long way in terms of society’s perception and treatment of disabled people, we still have a long way to go. I believe that one of the greatest barriers that I and other disabled people face is being met with poor understanding from able-bodied people.

When meeting somebody new, I must decide if I need to give them some sort of pre-warning that I’m disabled. Whilst I don’t really think I should ever have to do this; I can never really know how somebody is going to react to my disability. So sometimes giving them a head’s up can avoid awkward moments.

I’ve experienced all kinds of reactions, some positive, some negative, and some that are just weird! Of course, there’s always the chance they’re going to give you that startled look accompanied with “Oh, what’s wrong with you?”. Some people really seem to struggle to separate the disability from the individual in front of them, and some days it’s just exhausting to have to explain yourself yet again.

According to The Red Cross, one in two able-bodied people believe they have nothing in common with disabled people. A quarter admit they have actively avoided engaging in conversation with a disabled person. It’s no wonder then that it’s so hard to meet new people as a disabled person, when you’re met with pre-judgment and misunderstanding. Sometimes, knowing all of this makes me want to avoid meeting new people as it just doesn’t feel worth it.

What can we do?

The fight for equal treatment and access is ongoing. Barriers need to be tackled piece by piece. It’s okay if you aren’t feeling in a position to fight it today. But if you are, I believe that sharing your experiences is one of the most powerful things you can do, whether that’s online or in person. Disabled people deserve to socialise and make new connections as much as anybody else. If you aren’t disabled and encounter somebody who is, think about how you can be a good ally. It’s always good to ask what you can do to help.

You can follow Emily’s journey on her blog or on social media @ableemily.

Have you faced barriers when socialising? What did you find helps? Let us know in the comments below!

Ails

Thank you for posting this really interesting piece, @ableemily.  I can relate to some things you have mentioned here as although I don't suffer from anxiety, I do think a lot about access when going to somewhere new.  In the past when I have met someone new both in jobs and through dating, some people have treated me a bit differently until they have got to know me or even with dating haven't wanted to know at all when finding out I was disabled.  Quite shocking facts from the Red Cross regarding some able-bodied people's attitudes towards disabled people, but with people like yourself highlighting this important topic, hopefully one day things will change.  Your blog sounds interesting and I will take a look.  Good luck with everything and thanks again for sharing. 

Topkitten

I found this both interesting and accurate. It is just unfortunate that most healthy people will never read something like it.

We live in a society that tells us we are better off at home and having help come in if necessary. My personal belief is that it is just a way to keep us out of sight as much as possible because sooner or later the isolation makes it nearly impossible to go out and mix with normal company in normal places. I also believe that those places where access is non-existent or difficult to use or locate are signs that we aren't welcome but that they don't wish to break the rules or appear to be insensitive. Imo they are giving the impression of all 3 but that's just an opinion.

I have had two periods of severe anxiety regarding leaving the house but it isn't the leaving that is the problem as I love nothing more than getting out of my prison (sry, meant to say home) but it's the arriving somewhere I might meet strangers that is the main issue. My Mental Health issues comprise severe depression, agoraphobia, anxiety, panic attacks and paranoia however, my disability stems from more physical problems. Mostly these days I can avoid breaking down by going into a panic attack but to do so I become massively paranoid, enough to disbelieve everything anyone nearby says to me, I don't really know if I am better off as the paranoia makes me appear aggressive.

During my first period I did manage to make some progress and was doing quite well until my GP refused to increase my pain medication further and I became housebound. Two years on I have regained the ability to go out a little which won't last long but the GP wont put me back on the medication I used to be on so, if I do go out, it means taking more medication than I am supposed to (some of the patches I used to use I still have around). Ofc, were I to have an accident using my motability vehicle (even if it wasn't my fault) and the insurance company found out about the medication situation then they may very well void the insurance and that would end any chance I have of even maintaining even a minimal living financial level. Consequently I go out only when I am really desperate or when my children need me, just in case. It makes going out more of an issue from the perspective of anxiety.

Despite still looking reasonably acceptable (when I look after myself properly) I haven't dated since 2006 and all I have really done is to attend one or two groups run by MIND or the County Council or attending a local charity center in the past. Currently I feel unable to go to any of these as the other people attending will be mostly strangers now. Consequently I keep finding excuses not to go. Also, due to the medication situation, I am unable to restart the process of joining groups with help again. I have kept pestering the GP's as much as I can but after 3 months they still refuse to medicate properly.

Sorry have to go, ambulance crew has arrived.

TK

April2018mom

This is a interesting topic.

I find that being open to questions always helps no matter what. This morning my little man and I were at our local library for a weekly story time. Afterwards we went over to the children's book section. Another kid then approached us shyly. I encouraged him to venture closer to us saying “It is okay, little one. Please feel free to ask me questions about his wheelchair”. It is hard, isn't it? I get it. But ignoring differences is not good at all. 
I want my son to feel a part of society. That is why we try to go out as much as possible with him in his wheelchair. I am aware of all the dangers of social isolation as well. I try to actively combat myths in addition. 
I do think that this is a area for improvement. And this is why we need books on embracing differences and accepting disability for small children.

These are my top tips for ending the stigma and reducing embarrassment: 

1- Start the discussion early. 
2- Talk about all aspects as much as possible. Do not forget to answer any questions either.
3- Be honest and calm. Use storybooks to help teach kids about acceptance. Calmly refute any inaccurate myths. List some examples of what the person can do. Remember that words matter. Set a good example. Act as a positive role model. Try not to stress. What good will that do? Find out if you have anything in common. For example you might both love trains or books. 
4- Avoid telling lies. Be matter of fact at all times. Modify your expectations. 

Check out these posts on tips for talking to kids about disability http://www.whatdoyoudodear.com/on-talking-to-kids-about-disability-and_18/
http://www.whatdoyoudodear.com/using-a-custom-photo-book-to-talk-with-your-child-about-disability-and-a-giveaway/

WestHam06

Hi Emily, 
             Thank you so much for sharing this interesting and insightful piece. I can really appreciate what you are saying and find it sad that we still face these barriers so regularly, especially as you say the Equality Act was implemented a decade ago. I have had both positive and negative experiences as a wheelchair user. I had an experience recently which was very frustrating. I am a huge football fan and I enjoy travelling the country to watch matches at different grounds. On the whole, so far, I have had mainly positive experiences however I was at a game recently and we were seated in the wheelchair section. A bar ran around the whole of the pitch, it was lowered for the wheelchair section, however was lifted back up where the wheelchair section ended. This meant that, due to the wheelchair section being in one of the corners of the ground, I could only see part of the other end of the pitch. Along with this, the substitutes were warming up in front of the wheelchair section. A couple of the players stood and watched part of the game, blocking the view of people who were sat in their wheelchairs. A member of the crowd asked them politely to move as they were blocking the view and they just laughed at them.  It reminded me that as a society, we still have a long way to go to making social activities all inclusive. We have come along way and I have had many positive experiences  where people have gone above and beyond to make things inclusive and accessible such as shops providing temporary ramps so I can access them but more needs to be done. Thank you for sharing your experiences and for speaking out.  

EmmaJane

Very interesting article! As I recall, the problem with the Equality Act is that it doesn't include any provision for enforcement, relying instead on the disabled person themselves to make a complaint, and if necessary pursue legal action. Just another barrier in the way of real equality.

Denise11

Hi Emily
I have just been reading your blog which is very interesting especially the term you thought up about 'Access Anxiety'.  I'm a member of a disabled charity in Somerset called Compass Disability Services and we often wonder why we can't attract more disabled adults to come forward to see us!  Perhaps that's the problem?  We do have a lot of people with Learning Problems (I not trying to be rude in anyway saying that)  but not young people like yourself and we do need people like you, we really, really do!  I wouldn't say boo to a goose at your age but over the years things haven't been good for me so now people struggle to shut me up at times.  Please Emily, if you are going out to meet strangers tell them about you wheelchair because for one thing if there are stairs it could put you in a bad situation.  Also, if that puts them off meeting you they are the losers, not you as you sound to be a very likeable person.  Take life with little steps.  A step wrong may upset you though I hope not but if so learn by your mistakes. In time, you will become stronger for it.  Life will be very hard, but if it's that or starring at your 4 walls then what would you prefer? Do you go to work, by the way?  If so what do you do?  Please stay in touch with us?  I'm Denise by the way!  Can I ask, how long have you been disabled?  And when you became so, did you get much support from the NHS/Social Services.  It must have been a very hard thing to accept!  Take care  Denise

feir

I've been stuck at home for 2 years plus, not too lonely coz i have family who visit, but i think i need some rehabilitation on how to be involved in having a life again. It was hard adjusting to being left at home without proper support but went on so long that i can't remember what to do.

newborn

Emma Jane you are right.  Racism is more equal than other equality,  because it, alone, is a crime and will be pursued  by police and courts. 
Lack of any  effective  means  of enforcement mkes any law meaningless. 

shirleyt214

Thanks Emily, for sharing your experiences.  I too suffer 'access anxiety'.  The barriers became so bad that I decided to do something about it.  Firstly, I undertook my own accessibility survey of part the west end of Edinburgh.  An appalling 73% of public premises (restaurants, pubs & shops etc) are NOT wheelchair accessible.  I shared this information far and wide, including with Edinburgh Council and the Scottish Government and I came up against a brick wall.  Nobody wants to know or to have to take action. Although the Equality Act came into force in 2010, the Disability Discrimination Act was brought into force in 1995.  We are, as a nation, failing to address issues that were happening 24 years ago.  Why is this happening? 
I was so incensed that I started an online petition - https://you.38degrees.org.uk/petitions/let-us-in
My local newspaper, the Edinburgh Evening News covered the story- 
https://www.edinburghnews.scotsman.com/news/people/its-been-torture-wheelchair-bound-stroke-survivor-slams-lack-disabled-access-edinburgh-660965
And BBC Radio Scotland covered it in a broadcast.
But this issue affects 1.2 million wheelchair users throughout  the UK and needs to be highlighted.
Those in authority are not taking action. They are fully aware that this access problem exists.
I consider this situation - stepped entrance = no wheelchairs allowed.  They may as well put a sign stating this on their door.  If the sign said ' whites only' something would be done pretty damn sharpish.  I am not a racist, nor do I intend any offence.

Markmywords

Good points but it goes so much further than the social points raised.

Anxiety (or worse) comes from not being sure you can control your situation and the genuine hazards this might lead to.

There is no single approach that can work and we then have to read people we encounter as best we can too.

Social events often have some common interest at its core. Dealing with this can be where the real trouble starts. Even the pub or a coffee morning requires thought.
However, a basic common activity is a good place to start, interaction begins and it can develop with a handy distraction going on alongside it, yay!

So this is much, much better than something passive like a concert or birdwatching.

All outings/events involve higher efforts and risks than the averagely-able would incur. Therefore, more extensive planning is required from preparing all the way to returning to normal routines afterwards;

1. The event type - Inside or outside? Crowds? Teams? Physical and mental requirements from concerts to sporting events?
2. Is it something you can readily join-in with to break the ice?
   
3. The environment - Noise or extreme temperatures? An aid or barrier to mixing?
   
4. Travelling methods to the venue and in the venue - Vehicles and terminals required. Is this isolating for you?
   
5. Access conditions - Land, water, air? Natural or man-made? Stairs, ramps, surfaces such as open fields with hills and rough terrain?
6. Site facilities - Refreshments, toilets, first aid and resting. Also personal or group emergencies and evacuation!
   
7. Physical and mental aids to bring which might be necessary, along with carrying them.
   
8. Travelling from the venue - long queues to leave whilst you are now at a low ebb!

So all of the above could be stressful barriers before you have even opened your mouth!

I was once invited to a motor racing event with work. I was unprepared for both it and the huge task of just leaving! It therefore scared the life out of me and I struggled, which was noticed and I wasn't asked again, which rather suited me actually. So anxiety runs right through social events end-to-end !

I've also been invited to a pub quiz with work. Now that would be a great leveller with possible access to people outside the group. Sadly, the logistics prevented it.

If you receive any assistance at an event some people will perceive it as "preferential" treatment and will already have their backs up, not good !
Invisible disabilities may also be judged as "not bad enough to deserve it."

Those lucky people who have never suffered great hardship fundamentally think differently and many just don't want reminding that it exists !

So we've done all the above planning, are dealing with the stress of our physical and mental issues and potential hostility !

Is it any wonder we stay home and avoid the risks and considerable costs ??

Rower

my best advice is to forget what disability you have and find things you do beater than a able-bodied people at then their attached will change towards you   
for example i have being rowing for years and people in sport have never talked about my disability, and say i am more able-bodied  people ?