Cerebral Palsy
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Having problems with the culture due to my disability

AdamBoucherAdamBoucher Member Posts: 8 Listener
edited March 3 in Cerebral Palsy
I was born with Cerebral Palsy in 1984 not severely so, just with my hamstrings being so tight I can not stand unaided or for very long, I can just about make it to and from the car on crutches or my frame. I am living with my mum in swanscombe between Dartford and Gravesend in Kent and and am on the local council list for accessible housing but is it just me or is my area of Kent still living in the dark ages  when it comes to disability. It seems to be where ever I go I am judged on the wheelchair with little I can do about it, it seems to be the attitude that if you are a wheelchair user in this area then you must have a mental disability as well as the physical one, Has anyone else expirenced this. My parents wanted me to have the best of both worlds engaging with main stream when and where I could such as going through Main stream Primary and Secondary schools before going to Greenwich but this has left me in limbo as It seems to be I am not allowed to engage with main stream and if i prove them wrong it makes things worse, and what is set up for the disabled is set up for the severely disabled or those with learning difficulties so I would be bored of them in about 5 minutes flat. I like to be challenged taken out my comfort zone but again we seem to live in a culture where putting effort in is to be avoided. Below are a few examples i have had trying to do things with my disability. In reality it has left me in no mans land between the society for the able bodied and the society for the disabled.

I went to a riding school for the disabled from the age of 4 1/2 to the age of  14 1/2. Towards the end I was doing exactly the same week in week out and was getting frustrated by that, I could go on holiday to a holiday camp and do exactly the same there. I started to ask questions about doing more and even changed times to be with a more advanced group and they just moved everyone else to the new time. I complained one week and I got told I need to learn how to walk before I can run. When I did quit a letter was written explaining why but no one got in touch with me regarding the letter. Part of the problem may have been that most attendees came from a special needs school where it was part of the curriculum but for me it was not, it was down to the fact I enjoyed it.

Scouts
I got involved in the local scout group beaver colony at the age of 6 but did not have any real issues till in my late teens. I had gotten the awards in the cub section and the scout section (Chief Scouts Award) and had done pretty much everything for the queens scout award but the expedition part. County's first idea was a scheme similar to the Queens for the severely disabled which was too simple it would not work for me, it was pretty much get up, get dressed and take yourself shopping. They the suggested I plan a trip away with the journeying being by car instead of by foot or bicycle. That may have worked except the others in my district would not be able to achieve theirs by doing this so they told me they would rather spend their time getting drunk in the pubs. So never did get my Queens Scout award. I have had similar problems as a leader started off as an assistant leader in the beaver colony I went to as a 6 year old, the leaders had not changed which was good. I then started helping out a friend at another group who was due to loose her only other warranted leader. A year or so latter the leader at the group I was helping out at ending up moving up to take charge of the Cub section with no one to replace her so I offered which was accepted however the new leader at my old group had the attitude it was us or them which goes against the scout Law so I left there after having spent at least a decade and a half there. I managed to grow the section I took over from only 2 beavers when i took over to about 20 beavers however a lot of them then moved up to the cub section with no fresh blood coming into replace them. My assistant at the time spoke to the group leader assuring him she could get the numbers up so was asked to stand down, Not only did she not manage to get the numbers up she only lasted a few months before quitting and the section folding. I then went to a cub section in another district again struggling with numbers of children and leaders and again managed to turn things around though had assistant leaders who could not lead their way out of a paper bag. Either their ineptitude or political games (not sure which) ended up with me being asked to leave the group.

Church
I was going to the local Methodist church from about the age of 1 week old as my mum helped to run one age section of the Sunday school, at the age of 14 i moved up to the full congregation wanting more and was taught how to operate the audio and visual system becoming only the 2nd person at the church to do that, (important bit of info before going further the congregation was mainly women aged over the age of 50 who were only intrested in their women's social club) Over the years I gradually took on more and more responsibility's till I was not only the audio and Visual technician (the one who had trained me had left when his wife had left after becoming a local preacher) representative at several meetings, key holder, treasurer among others, but I needed more so wanted to explore ministry normally something which should be encouraged in a church but they were just more concerned with keeping me as their general dogs body so they could have their social meetings. After getting nowhere with the circuit despite the minister at the time of my calling encouraging me but stating that i had to wait for his replacement as he was leaving in a couple of months. Which I did and all i got was a no. After being messed about my congregation and circuit I resigned from my duties and left. I went to an Anglican church where i was assured i could explore ministry and I would not have to face the same problems at that church. After a year at that church I sighed up for a course which i completed though at the half way point the same priest who had said the majority are not always right told me that the majority are always right and I should be like the majority. A year after getting my certificate which gave me the Bishop of Rochester's permission to preach 6 times a year and lead worship 6 times a year I had, had enough. After a service at Rochester cathedral for those who had gone onto the Licenced Lay Ministry part of the course which I had applied for and got told I needed more expirence and to work out what area of ministry I am being called to. I spent 18 months with only going to one church service which was the funeral of the mum of the local preacher I mentioned earlier. The priest changed and I went back and got the oppertunity to do a little more though the culture of church in my area was not helping however he had a heart attack two Christmases ago and had to retire, since then my oppertunity to explore and go further in my faith has come to a stop, so when or if things go back to normal not sure I want to go back to church.

For me Lockdown has been no different from normal for me for the last 20 years, with no friends, no social life at all. It seems to be that i am judged as stupid or incapable of doing anything because of my wheelchair. I am totally ignored by local society, only noticed when they want to shove me back in the corner or they want something though my wants or needs are ignored and once they get what they want I am shoved back into the corner till they next want something. When I say no that is wrong as if someone in a wheelchair has no right to say No. 

I am hoping there are people out there who can relate to this and maybe help as I can not engage with local Society where I live (not helped by pretty much everything revolving around alcohol but when you cannot get into pubs or if you can, you cannot use the rest rooms what do you do, Plus with public transport not being wheelchair friendly you have to pretty much drive everywhere) and cannot live in isolation what does one do?

Hopefully some people out there may have some answers or tips that can help.
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Replies

  • Richard_ScopeRichard_Scope Posts: 2,839

    Scope community team

    Hi @AdamBoucher
    I really appreciate you posting about this, sadly we as disabled people and organisations like Scope have a long way to go in educating society about what being a disabled person is and what we can achieve. 
    I live with quadriplegic CP and use a wheelchair and I have encountered some of what you have mentioned throughout my life but I have always found a way to make people see my potential by being direct about what I want and what I definitely don't want. 
    When I encounter people with archaic attitudes I see that as an opportunity to educate and enlighten, in all honesty, it took me a while to get to that point.
    You have someone you can talk to here and I can sense the frustration in your post. By being visible we can change things.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • AdamBoucherAdamBoucher Member Posts: 8 Listener
    Thank you and I do agree however it may just be the area I live in but when I have tried to make my views known, trying both direct and indirect methods and I have just been totally ignored. Again it may just be my bad luck but most the people I meet in my area have archaic attitudes and when I try to educate them I just get told I do not know what I am talking about and if I try to prove them wrong by doing things  it again just makes things worse, hence the reason for the post as I just have no idea what else to try.
  • Richard_ScopeRichard_Scope Posts: 2,839

    Scope community team

    In what way does it make things worse? I'm really interested in what that means. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • AdamBoucherAdamBoucher Member Posts: 8 Listener
    People hate to be proven wrong even more so by a wheelchair user so they go out of their way to prevent me from doing anything similar in the future as if doing it once is bad enough we will not let them do that a 2nd time and in some case use political games to force me out of organisations even organisations which you think should know better such as the church and scout associations.
  • Richard_ScopeRichard_Scope Posts: 2,839

    Scope community team

    The church has a very complex relationship with disability and I imagine scouts is very similar. It really depends on what you are asking or expecting as well. There is still a lot of fear from organisations to let disabled people 'do' too much because of insurance concerns. Although, they will never say that.  I don't aim to prove people wrong, I focus on what I want. If that rolls on some toes so be it. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • AdamBoucherAdamBoucher Member Posts: 8 Listener
    Tell me about it but they are two of the only organisations i can get involved with were I live or at least when I was younger (though little has changed) there is pretty much nothing to do where I live that doesnt involve alcohol which I do not drink, due to needing to be able to drive as public transports for the disabled where I live is a joke and my dad has problems with alcohol maybe because it was his coping mechanism for dealing with my disability. I am looking for somewhere where I Can be treated the same as anyone else. At least in my area you still have the able bodied society and the disabled society which able bodied people try to keep out of sight out of mind. What little there is on offer for the disabled seems to be more for the more servery disabled or those with learning difficulties which is of no interest to me. I was encouraged when younger to try and get the best of both worlds but instead I find myself stuck in limbo.
  • Richard_ScopeRichard_Scope Posts: 2,839

    Scope community team

    Adam, you are not responsible for your dad's life choices. What is that you are exactly looking for? I know it's very difficult but you should try not to view it as an "us and them" situation. That mindset is isolating in itself and I speak from my experience. 
    Pubs and venues have changed a lot over the years most now have accessible toilets and are and not just alcohol dens. The majority are like restaurants and serve coffee. Nobody cares anymore that people don't drink. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • AdamBoucherAdamBoucher Member Posts: 8 Listener
    Unfortantly the area I live in is still not accessible unless the buildings are new builds as there are too many loop holes to the accessibility act having grown up and been a regular at  a church which didnt have accessible toilets until the majority of the congregation needed them by which point I was in the process of leaving. I guess I just want to be accepted for who I am and be able to make a contribution rather than constantly being judged on the wheelchair. The area I drink in pretty much everything that happens revolves around alcohol, it may be the area I am living in is still in the dark ages 
  • Richard_ScopeRichard_Scope Posts: 2,839

    Scope community team

    Not every building is perfectly accessible that is true. But that should not stop us from living our lives. I'm afraid that if we waited for everything to be completely accessible, the disabled community would never go anywhere again. I have found that the best way for me to challenge attitudes towards disability is to be as visible as possible. Be that online or in real life. Everybody in life is judged on something. Unfortunately, it is part of human nature. There are progressive, open-minded folk out there. Don't remove yourself completely from society, you don't have to drink alcohol, you don't have to be non-disabled. Just be you. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • AdamBoucherAdamBoucher Member Posts: 8 Listener
    unfortantly me being me has just led me to being isolated as I do not subscribe to the we all have to be identically the same mind set (like the model T ford) it is our differences which make us who we are, and which makes us great as no one is perfect, so what if our imperfections are more visible than others. However the culture I live in is the exact opposite to the thoughts i have just shared. Being Visible is again difficult in a culture which doesnt except you and open minded people are a luxury in my area as too many people are close minded.
  • Dsmout96Dsmout96 Member Posts: 11 Connected
    Hi @AdamBoucher as a man of 25, with diaplegic CP I can certainly sympathise with a lot of your points on this issue. Certainly for those of us living in smaller towns with limited public transport getting about can be an issue, especially late at night and even more so for those of us that use wheelchairs, mobility scooters or other bulky aids. I think people generally try to be helpful but don't always understand the challenges we face, or how they can best help. 

    In my experience when out and about with able bodied friends in crowded places, lie pubs, they often forget, we need them to go slowly, or else refuse to go out with us entirely because they don't want to feel responsible. It's so difficult for somebody who can get through crowds easily to understand that not everybody can do that and the fact of the matter is that us disabled people just can't move around as fast. 

    For me living in a remote town in the Cotswolds and using a mobility scooter there are certainly places where pavements are a little narrow, curbs are high and its not easy to access some areas with a wheelchair. 

    If we were to wait for everywhere to be wide and level, we would be still stuck at home at the age of 75. We cannot force people to accommodate us, yes there is legislation to cover the basics, such as ramps and accessible toilets, but people's attitudes and understanding requires a more gradual approach. We cannot control anybody but ourselves, we can only influence and that takes engagement, time and patience.

    Personally, I would say that people and venues that refuse to accommodate you due to your being "a fire risk" or such things really aren't worth engaging with and there WILL be places and people out there who will give you the time and understanding that you need and deserve.
  • AdamBoucherAdamBoucher Member Posts: 8 Listener
    I think that is a big part of my problem as have no friends to go out with, I use a Manuel wheelchair as there is no where to go within a short distance for an electric chair/scooter and anything further away, you have to be careful in case you run out of power. So to go anywhere I have to drive but even getting a disabled parking spot can be mission impossible at times. I understand it taking time and having patience but have been trying to change things for over 20 years and I have got nowhere and if I try to raise the issue I just get either ignored or told I am wrong. Unfortantly in my area most pleases are places that are not worth engaging with. I guess I am just tired of constantly banging my head against a brick wall.
  • Dsmout96Dsmout96 Member Posts: 11 Connected
    I wish you success in trying to improve things in your area, it's really a good and worthwhile (if frustrating) cause. In my own experience it is very easy to focus on all that we can't manage and everything that isn't how we would like it. During the pandemic everyone seems to be feeling the lack of stimulation and purpose in their lives, particularly if we struggle to get out, as well as places not being open when we do.

    I'm sorry to hear you feel you haven't any friends, is there any groups you could go to in your area (possibly virtually while covid's on). It's important to get a range of angles and perspectives on things, it forces you to think and respond and stimulates you there as well.  These are generally online now, and you wouldn't need to worry about parking or access etc. You could join in from the comfort of your own home.

    How do you feel about what your doing to manage your own CP?

    I get the impression that your perhaps a bit fed up with your own situation aside from the town and access issues.

    I was just like you 18 months ago, at which time I found the Calvert Trust, a charity which takes disabled people on outward bound holidays. A week with them showed me that there are so many people with worse disabilities than me, I am now so grateful for all I can manage, and focus on activities I can do and places that will take me, rather than worrying about unhelpful places and beating myself up over the things I can't do.

    Focusing on things you can achieve and achieving them does wonders for lifting mood, things will improve with the town in time but you can choose to either work around it or let it stop you.

    I hope I've not offended you in any way, please don't think I'm insensitive. 
  • AdamBoucherAdamBoucher Member Posts: 8 Listener
    Thank you and I agree and have always felt that i am lucky in regards to my disability as (can do most things most people do some better than they can do) I have it towards the mild end of the spectrum but that is a big part of my problem in my area people see the wheelchair and shove us all under the same umbrella, I am beginning to feel that having my disability on the mild end of the spectrum is more of a curse than a blessing as i would not be stuck in limbo and as frustrated as I am. Last year we had the black lives matter which is all about racial discrimination but when does discrimination towards the disabled make the news, when does people state disabled lives matter? Again in my area people claim there is no discrimination towards the disabled but there is still  an us and them attitude and I feel I am not allowed to or unable to fit in either category hence being stuck in no mans land. I have never let people stop me, my attitude generally is if people say I cannot do things than my response is just watch me, but I am now in mid life and maybe having a mid life crisis not helped by all the complaints about lockdown but for me that is no different to pretty much the last 20 years of my life.
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