Tag: discrimination

Interoception: The Inner Sense That Shapes our Experience

Introduction

Along with alexithymia, my autism diagnosis also made me aware of my lack of interoception. This has been a lifelong issue for me.

What is Interoception?

Interoception is our ability to perceive and interpret signals coming from within our own bodies. It’s an internal sense that informs us about the physiological state of our body, such as hunger, thirst, temperature, and internal pain. This sense can be both conscious and subconscious, and it plays a crucial role in maintaining homeostasis and facilitating self-awareness.

The Causes of Interoceptive Dysregulation

Interoceptive dysregulation can arise from a variety of sources. It’s often associated with mental health conditions like anxiety, depression, panic disorder, anorexia nervosa, bulimia nervosa, PTSD, OCD, ADHD, alexithymia, somatic symptom disorder, and illness anxiety disorder. Misrepresentations of internal states or a disconnect between the body’s signals and the brain’s interpretation of those signals are suggested to underlie these conditions.

Treatments and Techniques for Managing Interoception

Several approaches exist to enhance interoceptive awareness and regulation:

Mindfulness and meditation: These practices can enhance one’s awareness of bodily sensations and help regulate emotional responses.

Talking therapies: Cognitive-behavioural therapy (CBT) and other psychotherapies can assist individuals in better understanding and responding to their interoceptive signals.

Interoceptive training: Specific exercises that focus on recognising and responding to internal bodily sensations can be beneficial.

Aligning dimensions of interoceptive experience (Adie): A novel therapy that involves interoceptive heartbeat training to align interoceptive experience.

Conclusion

Interoception is a vital but often overlooked aspect of our sensory experience. By understanding and managing our interoceptive signals, we can improve our emotional regulation and overall mental well-being.

Understanding Alexithymia: The Challenge of Emotional Blindness

Introduction

In my autism diagnosis journey, and after several sessions meeting other autistic people through the National Autistic Society for Scotland in their Embrace Autism group sessions, I have come to realise that I can’t, and have never been able, to pinpoint what I’m feeling (emotionally) at any given time. This is a condition linked to autism that is named Alexithymia.

What is Alexithymia?

Alexithymia, often described as “emotional blindness,” is a condition characterised by difficulty in identifying, expressing, and describing emotions. It’s not just about being less emotional; it’s about having a hard time understanding what you’re feeling at any given moment. People with alexithymia might find themselves confused when asked how they feel, or they may struggle to recognise the emotions of others.

The Roots of Alexithymia

Although not fully understood, the causes of alexithymia could be influenced by genetics, brain structure, and early life experiences. Some studies suggest it could be related to damage in the insula, a part of the brain involved in empathy and emotional awareness. It’s also associated with various mental health conditions, including depression, anxiety, and autism spectrum disorders.

Living with Alexithymia

For those with alexithymia, everyday interactions can be challenging. They might appear distant or uninterested because they don’t express emotions in a typical way. This can lead to misunderstandings in personal relationships and difficulties in social situations.

While there’s no specific treatment for alexithymia, therapy can help improve emotional awareness and expression. Techniques like cognitive-behavioural therapy (CBT) and mindfulness practices can assist individuals in better understanding their own emotions and the emotions of others.

Conclusion

Alexithymia is a complex condition that affects how people perceive and express emotions. By recognising its presence and understanding its implications, we can create more supportive environments for those who experience the world differently.

Presuming Competence in Autistic People

How to Presume Competence Without Dismissing Disability Support Needs.

Autistic Social Hangovers

Autistic Social Hangovers

DWP Work Coach Shortage

DWP Work Coach Shortage Unable To Cope With Increasing Unemployment. Safestyle Goes Into Administration.

Space Invaders

This post, from the blog diary of a disabled person, explains what happens when people use spaces designed for disabled people.

Space Invaders.

What is Multiple Sclerosis and how does it affect people?

Multiple Sclerosis (MS) is a condition that affects the brain and spinal cord, causing damage to the nerves that carry messages between them. This damage can lead to a variety of symptoms, such as problems with vision, movement, sensation, balance, thinking and emotions. MS is a lifelong condition that can sometimes cause serious disability, although it can also be mild or moderate in some cases. There is no cure for MS, but treatments can help manage the symptoms and reduce the frequency of relapses.

MS affects more than 2.8 million people worldwide and around 130,000 people in the UK. It is one of the most common causes of neurological disability in young adults. It is more common in women than men, and usually starts in the 20s, 30s or 40s. The exact cause of MS is unknown, but it is thought to involve a combination of genetic and environmental factors that trigger an abnormal immune response against the myelin sheath, the protective layer that surrounds the nerve fibres.

MS is a complex and unpredictable condition that can affect people in different ways. There are four main types of MS:

  • Relapsing remitting MS (RRMS): This is the most common type of MS, affecting around 85% of people with MS. People with RRMS have episodes of new or worsening symptoms, called relapses, followed by periods of recovery, called remissions. The symptoms may disappear completely or partially after a relapse, but some may persist or get worse over time.
  • Secondary progressive MS (SPMS): This type of MS usually develops after many years of RRMS. People with SPMS have a gradual worsening of symptoms over time, with or without occasional relapses. About two-thirds of people with RRMS will develop SPMS within 15 years of diagnosis.
  • Primary progressive MS (PPMS): This type of MS affects about 10-15% of people with MS. People with PPMS have a steady increase in symptoms from the onset, without any relapses or remissions. PPMS tends to start later than other types of MS, usually in the 40s or 50s.
  • Progressive relapsing MS (PRMS): This is a rare type of MS, affecting less than 5% of people with MS. People with PRMS have a steady progression of symptoms from the onset, as well as occasional relapses. PRMS can start at any age.

The symptoms of MS vary widely from person to person and can affect any part of the body. Some of the most common symptoms include:

  • Fatigue: This is one of the most common and troublesome symptoms of MS. It is an overwhelming sense of exhaustion that can make everyday activities difficult or impossible.
  • Vision problems: These can include blurred vision, double vision, loss of vision, colour blindness, eye pain or flashes of light. These are often caused by inflammation or damage to the optic nerve (optic neuritis).
  • Numbness and tingling: These are abnormal sensations that can affect different parts of the body, such as the arms, legs or trunk. They are caused by damage to the sensory nerves.
  • Muscle spasms, stiffness and weakness: These are problems with muscle function that can affect movement, balance and co-ordination. They are caused by damage to the motor nerves.
  • Pain: This can be acute or chronic pain that can affect different parts of the body. It can be caused by nerve damage (neuropathic pain) or muscle spasms (musculoskeletal pain).
  • Problems with thinking, learning and planning: These are cognitive problems that can affect memory, attention, concentration, reasoning and problem-solving. They are caused by damage to the brain tissue.
  • Depression and anxiety: These are emotional problems that can affect mood, motivation and self-esteem. They can be caused by the impact of living with MS or by changes in brain chemistry.
  • Sexual problems: These can include reduced libido, erectile dysfunction, vaginal dryness or difficulty reaching orgasm. They can be caused by physical or psychological factors.
  • Bladder problems: These can include urinary urgency, frequency, incontinence or retention. They can be caused by damage to the nerves that control bladder function.
  • Bowel problems: These can include constipation, diarrhoea or faecal incontinence. They can be caused by damage to the nerves that control bowel function.
  • Speech and swallowing difficulties: These can include slurred speech, difficulty finding words or swallowing food or drink. They can be caused by damage to the nerves that control speech and swallowing.

The severity and impact of these symptoms can vary from person to person and over time. Some people may only experience mild or occasional symptoms, while others may have more severe or frequent symptoms that affect their quality of life. The symptoms can also be influenced by factors such as stress, infection, temperature, medication or menstruation.

MS can be a challenging condition to live with, but there are ways to manage the symptoms and cope with the changes. There are various treatments available for MS, such as medication, therapy, surgery or complementary therapies. These can help reduce inflammation, prevent relapses, slow down progression, relieve symptoms or improve function. There are also support services and resources available for people with MS and their families, such as MS nurses, physiotherapists, occupational therapists, counsellors, social workers or support groups. These can provide information, advice, guidance, practical help or emotional support.

MS is not a fatal condition, but it can affect life expectancy to some extent. The average life expectancy for people with MS is about 5 to 10 years lower than the general population. However, this can vary depending on the type of MS, the age of onset, the severity of symptoms and the availability of treatment. Many people with MS can live long and fulfilling lives with the right care and support.

If you want to learn more about MS, you can visit the following websites:

  • MS Society: A UK charity that provides information, support and research for people affected by MS.
  • MS Trust: A UK charity that provides information, education and specialist services for people living with MS.
  • NHS: The UK’s national health service that provides information and advice on health conditions and treatments.

What is autism and how does it affect people?

Autism is a lifelong developmental disability that affects how people communicate and interact with the world. It is not an illness or disease, but a different way of thinking and processing information. Autism is also known as autism spectrum disorder (ASD) or autism spectrum condition (ASC), because it covers a wide range of abilities and challenges.

According to the National Autistic Society, more than one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK. However, this number may be higher as many autistic people may not have been diagnosed or identified yet.

Autism is a spectrum condition, which means that every autistic person is unique and has their own strengths and difficulties. Some autistic people may need a lot of support in their daily lives, while others may be able to live independently. Some autistic people may have learning disabilities, mental health issues or other conditions, while others may not.

There are some common characteristics that autistic people may share, such as:

  • Social communication and interaction challenges: Autistic people may find it hard to understand and use verbal and non-verbal language, such as gestures, facial expressions and tone of voice. They may also struggle to make eye contact, initiate and maintain conversations, or take turns in speaking. They may prefer to communicate in different ways, such as using pictures, symbols or sign language.
  • Repetitive and restrictive behaviour: Autistic people may have a strong need for routine and predictability, and may get upset by changes or unexpected events. They may also engage in repetitive actions or movements, such as rocking, spinning or flapping their hands. They may have highly focused interests or hobbies that they are passionate about and want to share with others.
  • Sensory differences: Autistic people may experience sensory input differently from other people. They may be over- or under-sensitive to sounds, lights, smells, tastes or touch. This can affect how they cope with everyday situations, such as crowded places, bright lights or loud noises. They may seek out or avoid certain sensory stimuli to regulate their emotions or cope with stress.

Autism is not something that can be cured or changed. It is a part of who a person is and how they see the world. However, with the right support and understanding, autistic people can live fulfilling and meaningful lives.

If you think you or someone you know could be autistic, you can find out more about getting a diagnosis and where to get support from the National Autistic Society website.

The Challenge is to be Accepted for The Challenge

Some of you might know I enjoy a challenge.  Something to push me, to take physical limitations and see what I can do with them.  Some of these challenges have hopefully made people think about what I and perhaps they are capable of.  Maybe think about what limitations are imposed on them and where those limitations come from – whether that be from within or from external sources.  I have been told by a few people that some of what I’ve done is inspirational and that’s awesome – the thought that something you do can have an impact on someone else is mind-blowing.

Now usually when I sign up for or arrange these challenges it’s relatively straightforward.  I follow whatever process is in place and fill out paperwork etc, hand over whatever details are requested and sometimes have a chat with someone about any adaptations that might be needed to allow me to participate.  That last bit can be essential for reasons of health and safety or just to make life easier for either me or for other people and it’s not something I mind in the slightest – I would much rather people ask me than make assumptions or guess and get it wrong.  So that’s all easy and then at the allotted time I turn up, do the necessary (hopefully successfully). have some fun and meet some amazing people, tire myself out and then go home again.  Sometimes there are interviews with press and TV or radio people as well.

In this modern age disabled people can be seen all over the place.  We work, we have relationships, we socialise and we do sport and so on.  Basically just living a modern lifestyle based around our interests, same as everyone else.  We have this year had a fantastic time for sport in particular with the Paralympics being a lot more visible than ever before and according to research changing a lot of opinions among members of the public towards disabled people.

So imagine my shock when, given the above, I signed up to take part in the 2013 Edinburgh Marathon and then the next day signed up to do the Edinburgh 5K wheelchair race being held the day before the marathon and, after receiving emails confirming my entries had been accepted I then received one telling me I wasn’t allowed to take part in the marathon as they didn’t allow wheelchairs onto the course.  Here’s how it went…..

From: Lady at GSI Events
Sent: ‎29‎ ‎November‎ ‎2012 ‎09‎:‎46
To: daniel_anderson_mcintyre@hotmail.com
Subject: Edinburgh Marathon Festival 2013
 

Hi Daniel

 
I was just having a look at your entry for next year and noticed that you have entered both the standard marathon and the 5k wheelchair race? Could you confirm which race you wish to take part in (the full marathon doesn’t have a wheelchair option)?
 
Many thanks
And my reply to that was:
From: Daniel Anderson-McIntyre
Sent: ‎29‎ ‎November‎ ‎2012 ‎09‎:‎53
To: Lady at GSI Events
Subject: RE: Edinburgh Marathon Festival 2013
 
Hi xxxxxxx,

 
I was hoping to do both.  I am a wheelchair user and there’s nothing on the marathon page about wheelchairs being excluded.Dan McIntyre

So the next contact I had was with another lady whose signature says she’s an events manager, this is what she had to say:
From: Lady 2 from GSI Events
Sent: ‎29‎ ‎November‎ ‎2012 ‎10‎:‎21
To: daniel_anderson_mcintyre@hotmail.com
Subject: Edinburgh Marathon Festival
 

Hi Daniel,

 
I’ve been passed your email from the marketing team.  Thanks for your interest in the Edinburgh Marathon.  Unfortunatley there is not a marathon wheelchair race.  UKA rules state that any wheelchair or handbike race must be separate from a running race and due to the road closure timing restrictions we are not able to facilitate a wheelchair or handbike race for the half or full marathons.  We do not have the same restrictions for the 5K race.
 
I am sorry that we are not able to offer the marathon race however I hope that you enjoy the 5k race on the Saturday.
 
Many thanks, 

So I got hold of an up-to-date copy of the UK Athletics regs and read them top to bottom paying particular attention to the sections on road races and the amendments for disabled participants.  Finding nothing to corroborate what this lady had told me I responded
From: Daniel Anderson-McIntyre
Sent: ‎30‎ ‎November‎ ‎2012 ‎10‎:‎24
To: Lady 2, Lady 1 at GSI
Subject: RE: Edinburgh Marathon Festival
 
Hi there,

 
Having read the UKA rules for road races and the rule amendments for disability athletics (rules 201-215 and rules D206-D212) I am unable to find anything to corroborate your comment “UKA rules state that any wheelchair or handbike race must be separate from a running race”.  I wonder if you could point this rule out to me?
 
Thanks.
Dan McIntyre
And the reply I got was:
From: Lady 2
Sent: ‎30‎ ‎November‎ ‎2012 ‎14‎:‎54
To: Daniel Anderson-McIntyre
CC: Lady 1
Subject: Re: Edinburgh Marathon Festival
 

Hi Daniel,

 
Thanks for your email.  I have spent some time going through the rules this morning and you are completely correct – it doesn’t need to be a separate race just a separate category.  We start hand bike and wheelchair athletes at the front of the race so that there are not wheelchairs or hand bikes interspersed in a mass of runners reducing the risk of injury to all participants.  The 5k has a lane designated so that on the downhill section where the wheelchair and hand bike participants generally reach higher speeds.
 
Due to health and safety issues, we can’t allow a wheelchair category in the full marathon however I can investigate this for the half marathon further.  Can you let me know if you are interested in racing in the half marathon and if you are what time you would expect to complete the race in, that you would be racing in a self propelled wheelchair and the spec of this wheelchair (for example standard or racer).
 
Thanks Daniel,
Now this was really annoying as it makes assumptions about responsibility and control, basically says I would be a health and safety risk and also attempts to persuade me to enter a lesser event.  So my response to this was terse:
From: Daniel Anderson-McIntyre
Sent: ‎04‎ ‎December‎ ‎2012 ‎10‎:‎19
To: Lady 2
CC: Lady 1
Subject: RE: Edinburgh Marathon Festival
 
Lady 2 and Lady 1,

 
No, I am not interested in taking part in a half marathon.  If I had been then I would have entered and paid for that event.
 
I have registered and paid to enter the marathon and the 5K.  At the time of entry (and, having just checked, still) there is nothing in the event details to say that I may not do this.  Looking at the terms and conditions again there is nothing that says I cannot and in fact the terms and conditions state that the only wheeled devices allowed on the course are wheelchairs.
 
So far you have quoted a non-existent UKA regulation to me and now you are trying to use “health and safety issues” as an excuse for not allowing me to participate.  This is beginning to sound like deliberate obstruction aimed directly at a disabled person.
 
Dan
This was met with an out of office message advising people with queries to contact several other names, so I forwarded the above to all the addresses given.  Over a week later I had still had no response so followed it up with:
From: Daniel Anderson-McIntyre
Sent: ‎12‎ ‎December‎ ‎2012 ‎12‎:‎36
To:  Lady 1, Lady 2, Several other team members
Subject: FW: Edinburgh Marathon Festival
 
Hi there,

 
8 days after the below I have not had any response.  Would someone kindly let me know what the plan is moving forward?
 
The last contact I had was on Facebook when someone asked me to message them, which I did.  The reply I received was “Thanks Dan” which is no use to anyone.
 
Am I to be allowed to participate in these events or not?  If yes then please say so and if not please arrange for a refund of all fees paid and I will contact a solicitor.  
 
I would appreciate a response by close of play today.
 
Dan
Now whether it was the mention of a solicitor that did it or not I don’t know but 7 minutes later I received the following:
From: Lady 2
Sent: ‎12‎ ‎December‎ ‎2012 ‎12‎:‎43
To: Daniel Anderson-McIntyre
Subject: Re: FW: Edinburgh Marathon Festival
 

Hi Daniel,

 
Apologies for the delay in responding to you, we have been chatting to Run Britain and the race director to come up with some guidelines and what would be required to accommodate wheelchair athletes on the marathon course.
If you can bear with me until early next week so that I can fully respond with all the information.  It would probably be easier to give you a call, would you be able to give me the most convenient number to call you on and we can chat through it early next week?
 
Thanks,
Now this is starting to sound more positive but I prefer to keep things like this to written communications.  Telephone calls are not only painful for me but are a great tactic often used by managers in order to avoid gathering of evidence.  With this in mind I waited for them to come back to me via email with more info.  After waiting until the back end of the following week I got back in touch with them:
From: Daniel Anderson-McIntyre
Sent: ‎19‎ ‎December‎ ‎2012 ‎22‎:‎06
To: Lady 2
Subject: RE: Edinburgh Marathon Festival
 
Hi Lady 2,

 
It’s now late next week and I’ve heard nothing.  This has been going on for almost a month now and is becoming ridiculous.  I really must push for a resolution asap.  Not only is this getting extremely annoying but I also need to make plans as the intention is to fundraise for a Cancer support charity through this event, a JustGiving page was created when I received the confirmation email and has already had donations.
 
I find it difficult to understand what the problem is and why GSI Events seems intent on excluding disabled participants, particularly given the sporting achievements we have seen this summer.
 
I wonder what view the Edinburgh News and BBC Edinburgh would take…?
 
Dan
And very quickly I received a response, sent from her iPhone no less:
From: Lady 2
Sent: ‎19‎ ‎December‎ ‎2012 ‎22‎:‎44
To: Daniel Anderson-McIntyre
Subject: Re: Edinburgh Marathon Festival
 
Hi Daniel,
 
I tried to call you on the number that you gave us on our system however it just rang but was going to try again in morning as it was quite late on Monday and Tuesday I called. 
 
Basically I’ve spoken with the race director and he doesn’t see an issue but there is a section of the course later on that I wanted to just alert you to as its not Tarmac, it’s a gravel surface, we fill in any large holes but it was just to say its not as good a surface as normal roads. As long as you’re fine with that then we don’t see any issue. Was going to ask as well if you plan to have someone with you as you complete the race? 
 
Will try you again in the morning if you want to chat anything through.
 
Best wishes,
Lady 2Sent from my iPhone

And my response (after heaving a sigh of relief and wondering why they didn’t just do this in the first place) was:
From: Daniel Anderson-McIntyre
Sent: ‎20‎ ‎December‎ ‎2012 ‎08‎:‎34
To: Lady 2
Subject: RE: Edinburgh Marathon Festival
 
Lady 2,

 
Thank you.  The gravel shouldn’t be a problem and I may have my Fiancee with me but I’m not sure at the moment.
 
Dan
And after this the entire tone of the communications changed.  I don’t know whether anyone had “had a word” with this lady or what but she’s suddenly become very helpful:
From: Lady 2
Sent: ‎20‎ ‎December‎ ‎2012 ‎12‎:‎06
To: Daniel Anderson-McIntyre
Subject: Re: Edinburgh Marathon Festival
 

Hi Dan,

 
Just tried to give you another call but no answer, just checking that I have the correct number xxxxxxxx269?
Anyway glad that the gravel won’t cause you any issues.  It all sounds very romantic completing a marathon together but hard work!! 
 
If you need to chat anything through or ask any questions then just ask, my number is xxxx xxx xxxx or you can email me, whatever suits you.
 
Good luck with the training and Merry Christmas when it comes.
 
Best wishes, 

So she got the wrong end of the stick about my meaning but when I pointed that out I got another surprise:
From: Daniel Anderson-McIntyre
Sent: ‎20‎ ‎December‎ ‎2012 ‎12‎:‎27
To: Lady 2
Subject: RE: Edinburgh Marathon Festival
 
Hi Lady 2,

 
The number is correct I just can’t answer as I’m at work.  My fiancee won’t be doing the marathon with me, I’m hoping she’ll be there to see the start and end and also transport my normal wheelchair between the 2 points.
 
Thanks – Dan
And the surprising and helpful bit:
From: Lady 2
Sent: ‎20‎ ‎December‎ ‎2012 ‎12‎:‎45
To: Daniel Anderson-McIntyre
Subject: Re: Edinburgh Marathon Festival
 

Hey,

 
Ok no problem.  Give me a shout nearer the time and I’ll get a parking space sorted out nearby for her to go to.
 
Thanks,
So all’s well that ends well and I am able to make this my big challenge for 2013, but why does it feel like it’s been a challenge already and why, in this day and age, should that have been?