the opposite of independence...

is not dependence..

I had a conversation yesterday, and its going me thinking. I was explaining how I wanted to be more independent, and the response I got was, so who are you dependent on?

But, having thought about it a lot, independence for me is not the opposite of depending on someone and relying on someone, it is the inability to be able to properly and effectively manage day to day life, whatever that might be.

It isn't a simple black and white concept. I consider myself quite independent in that respect thank you. I have lived in my own flat for 4 years, I manage my money up unto a fashion, and manage to survive at uni. But...

theres always a but. As I look around my flat, I always question, is there more to life than this (not in a religious type way). Is there more than a constant battle against an untidy flat, washing dishes, getting up in the morning, getting through the day without crying or having a meltdown, that sort of thing.

I can manage at home, but I don't call it living at the moment, I call it surviving. The 3 month backlog of dirty clothes thats in the bath that the cat likes to sleep on is testament to that. If I get an unexpected bill, or a direct debit has a problem I can't cope. It feels to me like walking on a thin ice of independence, something that I want to strengthen. I would love to be able to cook myself a main meal, to be able to get a direct bus, straight home without worrying about the journey or using a weird and personalised route.

So, weirdly, and ironically enough, as I think the case is for other disabled people, independence actually means dependence. It is about knowing who, where and when to be able to ask for help. To know your limitations, and not see it as a weakness to say, actually, yes,  I can't do this on my own. That to me is independence. The ability to manage my life in a cohesive and structured fashion, based on the limitations of living in a disabling society. It is not about being proud that you are not being dependent on anyone, but being proud that you rely on other people to achieve tasks, but remain in control of your own life, that is to me is what makes you independent.

I am starting slowly on that journey of independence, but its really hard to ask for help, because as was demonstrated society sees that as a sign of weakness, but for me, I need to see it as a sign of strength.

public transport and me.

I am a disabled person. Not that you would know it. Until, that is, you test out your theory that I am not. This does unfortunately happen on a regular basis see (http://t.co/eYaOveO8 http://t.co/nV1sBfow http://www.sheffieldforum.co.uk/showthread.php?p=6458207)

What hurts the most is peoples attitudes, including the drivers. I have been on buses going back to depots before where drivers chat amongst themselves. Very often its, o I had a passenger run for a bus and yep, you guessed it, she had a disability pass, or at least 80% of those passes are faking.

I personally think that there is desperate need of training for these drivers. If they have that attitude, it makes travelling on my local buses very difficult and at times impossible. I love the sign on the priority seats on the southern train that say the need for this seat may not be immediately obvious.

If you look at the public transports criteria for a national concession pass (disability) it does vary accross the UK. However, in my area of south yorkshire these are the rules:

How to qualify for a pass

If you live in South Yorkshire and are under 65 years of age (there are some exceptions (PDF, 189Kb)) you may qualify for a pass if you:

• are blind or partially-sighted
• are deaf of without speech
• have a disability which has a substantial and long-term adverse effect on your ability to walk
• do not have arms or have long-term loss of the use of your arms
• have a learning disability, or
• have been or would be refused a driver’s licence on medical grounds (other than on the grounds of persistent misuse of drugs and alcohol).

These are very clear. And there is only one catergory which mentions a persons inability to walk. All of the other criteria could be considered invisible, and at least 2 criteria could mean that you have the need of a specific seat in order to be able to cope on public transport. 

I qualify under the last category because of my impairment I will never be able to drive a car. I see and use the bus as my car. I shouldn't however expect abuse, and if I don't get it consider it a good journey. I shouldn't have to travel with someone else on long journeys, or rely on someone to be at the bus stop to make sure I get on and off. But I do, because of the way the buses are so inaccessable for me at times.

I have been on a bus before where the bus driver made a snap (and wrong) decision. There was a buggy in the buggy bay and a wheelchair wanting to get on. Instead of insisting that the buggy was folded, the driver turned to me and started attacking me for taking up the single seat, one that I showed him I was entitled to sit on. He still persisted in his mission, and in the end the buggy was shoved right up next to my seat leaving me trapped and complelty panic stricken, as thats the very reason I get a single seat. 

It is about not judging and accepting the situation as they find it. Now, I am not saying that all public transport workers are evil. I have a good story to share as well. I was on a train, a challenge for me anyway, because I don't like them at the best of times, but this was rush hour. As the platform got more and more packed, the mantra I kept telling myself over and over again (just so I didn't give up and go home) was quite simply, just get on the train, find a seat and sit in it. So, thats what I did. Not thinking that someone else might have reserved the seat.  And as per usual, it would seem that person was the aggressive type, and thats just not something I can cope with and I could feel panic rising as he demanded with meanaces and by poking me his god given seat. I asked him if he could find somewhere else, but no. So, off he went to find a guard. By the time the guard came back I was having a fully blown panic attack and the only thing I could think to do was show my disabled persons bus pass to him. The guard was great and dissolved the situation by moving the guy into first class. I know i was partially in the wrong, but I just so grateful to the response of the guard because he could have very easily made the situation worse. 

Please don't judge on who is disabled and who isn't. You will find out very quickly if you test it out who is, and I don't think anyone wants that...

Inspirational?

First, this is not a criticism of anyone, just an analysis and hopefully a positive message...

So, has anyone called you inspirational, for well, just being you?

I have, twice, both quite recently. I have in the past, but I think its different this time because they are friends and they mean it in a genuine and lovely way.

Now, all my degree training, and my general disability activist stuff is screaming at me going, you shouldn't be taking that inspirational crap. You'r just living your life, but slightly differently. Yes, fair enough, if someone claps me for going to the loo, or getting up in the morning and starts calling me inspirational they are likely to get a slap.

But should you dismiss the whole inspirational, brave argument by that one sweeping 'supercrip' idea? Well, I don't think so. I think its important to take praise when praise is due to you.  By simply dismissing someone saying you are brave or inspirational because it is patronising is, in my opinion wrong. After all, there aren't that many people I know who have to put up with the stuff I do from the world I live in on a day to day basis, and still get up the next day with a smile on my face.

If I am truely making people think differently about disability, or about how to live your life in general, and inspiring them to change or take action, then I don't find that word cheesy, ironic or misused. It is being used in its correct context in its correct time.

If, (as I did last week) get on a train in rush hour and have a panic attack because of the way I was treated on the train, but still make it to national disabled students conference, then yes, call me brave. It did feel like climbing mout everest let me tell you. And if when i get to that conference I took part, spoke up, and got elected to represent disabled students nationally, then yes call me inspirational. Don't be afraid of the use of the word because I am disabled and I might get offended by you patronising me, I wont.

I will get offended if you do misuse the word in a pat me on the head, didn't I do well kind of way. It is all about context, and the meaning behind the word. As an invisibly disabled person its not often I get treated like that, but I guess what I am saying is:

Don't judge me by your standards, judge me by my standards. And very often I will deny to myself the impact I am having on other people, and it is really important for me to hear that I am making a difference, that it is all worth it. If I make a difference to one person its worth it. To inspire someone could be to inspire the next great leader, or world shaker. Don't be afraid to say it, just make sure you say it for the right reasons and with the right intentions.

my manifesto for #NUSDSC

Im running for the position of Womens rep on the National Committee.. heres why...

Hi, my names lucia, and Im a student at Sheffield Hallam university. I have just been elected disabled students rep at my union for next year and I would love to be on the national committee representing women as well.

I study Education and Disability studies, so I have a good theoretical understanding of disability and gender based issues as well as a practical experience of being a disabled person (and a woman!) It is my career aim to work with disabled students to help them overcome the barriers they face and achieve their potential. I really want to represent disabled students and advocate them after I graduate, to get the opportunity to do this beforehand would be amazing and a real fulfilment of my dream.

I have become increasingly involved in campaigning and raising disability awareness since I went on the hardest hit march last October. I really believe that disabled people are once again uniting together and that we are experiencing a new era of campaigning and getting our voices heard. I really wnat to be a part of that on a national level as well as a local level.

I have just been elected as disabled students rep at my union. my manifesto and aims are to raise the profile of disabled students within hallam and to increase awareness of what it means to be a disabled student and how to access support and other relevant services. My campaigning was focused on handing out 200 purple and gold spotted ribbons that also had a tag, directing students to a blog about disability equality.  I firmly believe that it is by doing the small little things that will make the biggest difference, it was great to see my ribbons being worn around campus and I really believe that they made a big impact and got people curious.

I am a great believer in cross liberation, and at a local level I am going to work on engaging with the other part time representatives (LGBT+, International, Black, Womens) to ensure that students who identify with more than one group are well supported. I believe that the system of authentic representation works, but only if all representative groups work together to achieve equality. This is something that is also true at national level. Having studied a module about the theory of multiple identities (belonging to more than one minority group) I really feel passionate about it, and able to act on that to achieve greater changes, and acceptance within different representative groups.

Please vote for me to be your womens rep on national committe, and I will be committed to making positive changes on your behalf.

don't forget where we came from...

16th June 1976. The Soweto uprising in South Africa. Along time ago, and not much to do with the current disability movement in the UK right? No, wrong. I have been studying international perspectives on disability since the start of this year and I really wanted to share the surprising connections that I have found when looking at South Africa and in particular Soweto.

Historically, South Africa is I think most well known for its Apartheid regime, and the imprisonment of Nelson Mandela, who spent 27 years on Robin Island before coming to power in 1994 in the first non racial elections held there. For those who don't know, the Soweto uprisings (as it is now called) started off as a protest, by schoolchildren who didn't want to be taught Afrikaans at school, because it wasn't their native language. Although it is very hard to determine the exact events of the day, it resulted in hundreds of schoolchildren being shot by the police and army because of their protest. Because of the colour of their skin.

Soweto (Literally SOuth WEst TOwnship) was a township in South Africa that had been created to keep black people segregated from white people. It was a poor community, conditions were basic, and life was hard. To be a black person in South Africa was to be right at the bottom of the systemically imposed racial hierarchy. There was only one thing worse. That was to be a black disabled person. As there was very little state provision for black people, working for a living was essential for survival. If you couldn't work, (considering the fact that the jobs for black people involved long hours, physical labour and pretty much all the things white people didn't want to) you couldn't survive, or you had to rely on someone else for your survival.

As this article  suggests black disabled people were often segregated in institutions which, as there was little funding were harsh environments and held little hope of a decent life. In South Africa (probably more so than in the UK at the moment) work was seen as the answer, the way out of poverty and powerlessness. It was quite literally the key to survival. In 1981 a group of Disabled people in Soweto (I can find no information about their racial identities) decided to change things.

They set up an organisation called the Self Help Association of Paraplegics (SHAP). Its Aim was simple, to employ, and ultimately empower disabled people. It did this by creating a factory where disabled people were employed, and only disabled people were employed.

Now, pause a minute, consider the history, the backdrop to this scene. It is 1981, 5 years after the Soweto uprising, 13 years before the end of apartheid. This group of people were considered the lowest of the low in South African society. Not only did they only employ disabled people in the factory, disabled people themselves took control, and ran the factory. This was revolutionary, but speaking as someone who studied South African history at school, not overly documented or seen as such. I am guessing this is how they 'got away with it'. Black disabled people were incapable of pretty much anything in the eyes of the South African authorities, they probably didn't notice, or didn't care about this small venture, and certainly black south africans didn't see the significance, because I am guessing if they did, then once again, it would have been shut down for threatening to challenge the status quo.

This so called self help factory succeeded. They secured funding, secured contracts, and by 1989 employed 130 disabled people in various different roles in the factory. It was run by disabled people, for disabled people, and people believed in it so much, and were so motivated they would work for expenses alone to enable the factory to expand and grow to employ more, and take on more work. The model that the factory uses has been copied and is being used in other factories across south africa. You can read more about this enterprise here: http://www.independentliving.org/toolsforpower/tools31.html

So, how is this relevant to us here in the UK today? Vic Finkelstein, one of the founding fathers of the social model of disability came to the UK from Apartheid South Africa, and made a direct link between what was occouring there for black people and what was happening for disabled people in the UK. (see here: http://www.independentliving.org/docs3/finkelstein01a.html) Although he doesn't mention black disabled people directly, he describes his experience as a white disabled person being like that of a black person, denied entry to buildings and unable to fully engage with society (until he went to jail) and it was this experience that had a direct impact on his desire to change the system for disabled people in the UK.

The main message i get from this case study, is that of hope. That even in the most oppressive of regimes, the people who are right at the bottom of the social structure in society can do something like this. It is akin to the 'nothing about us without us' movement in calling for more authenticity when it comes to the way society deals with disabled people. To give back the control to disabled people. More so, especially now, it gives me great encouragement for the new disability movement, and it motivates me not to give up. If a group of disabled south africans can bring about such positive change, why can't we? It is not beyond our power, or expertise to replicate what the self help factory has done (the emancipation of disabled people,not the literal activity) It really makes me think that anything is possible, and I hope it will make you think too.

one giant leap out of my comfort zone

social aniexty and pubic speaking, The two don't really go hand in hand do they?

Well, in case you haven't realised yet I find myself in the position of running for disabled students rep at hallam union. Campaigning started ooo 26 minutes ago now, and so far i am doing well.

Ok, so i have tweeted a few things and displayed a couple of links on facebook. Simple. Tomorrow is when the real fun starts. From then I will be approaching complete strangers with little purple ribbons urging them to think differently about disability. By just being there, running for this post, I am already challenging perceptions. I don't own a wheelchair, and I don't 'look' disabled.

But if you look closely, you might see how scared I am of talking to you, and you might notice the little things i have built into my campaign to make it easier for me to communicate to the students about my aims, objectives and stuff.

1) I have a blog. www.onepennychange.blogspot.com. The aim of this is for me to be able to clearly spell out my campaign, my goals and aims. So if all I can manage is to hand someone a ribbon that has that blog link on it, then I have succeeded in getting the message out there.
2) I have business cards, summarasing my key points. Its just as much a reminder for me,as it is easy for other students.
3) I have arranged meeting points that are being advertised around campus via my posters. So, for an hour I have pledged to be at a certain place and at a certain time so that I can be found to talk to. this is going to make it so much easier for me. and i hope other disabled students..

so, yes, wish me luck. This next week is one giant leap out of my comfort zone, moreso than the post i am running for..

dear bus driver, (an off duty bus driver, getting on at my stop, in his uniform)

It was a simple request, do you need to sit there? I didn't need to be challenged about my need to sit there, or roughly pointed to all the other seats on the bus, I very rarely have the confidence to ask someone to give up their seat for me, but I thought a bus driver would understand.

You see, the other 2 single seats were taken up with a pram that shouldn't have been there, as per usual. The mothers not understanding the location of the buggie area.

I didn't need to be questioned, and then have to prove my need by saying, look mate I have a mobility pass, Do you need to sit there?

I didn't want to explain to him that my single seat on the bus is my lifeline. If the buses dont have single seats I can't travel on them. You see, I have a fear, well many fears of sitting on the regular seats. Number one, I don't like being touched. Number 2, I dont like being trapped, number 3, I cant stand people talking to me, number 4, I dont like men, so its a 50 50 if a man sits down next to me.

But why should I have to explain that? Why does the intimae details of my need for a single seat need to be aired before I am granted a single seat? I know that tm when I go on a train to Leeds, I will more than likely have to sit next to someone. It is pure hell, but something I am preparing for, because i know its only luck if i dont.

And then, dear bus driver, why when you got off the bus did you feel the need to call me a freak? I am now at uni for the one day of the week I am in, shaking, and unable to learn properly. Terrified of how im going to get home. Don't you understand, Im not making this up?

I might write and complain, because its not the first time I have been treated this way over a single seat. Even been assualted by bus drivers before. Its a training issue, and it needs sorting.

so, bus driver, you might understand why I needed that single seat after all...